https://simplecast.com Rare Care Podcast Rare Disease Advisor's Rare Care podcast features conversations with experts, healthcare providers, patients, caregivers, and advocates about treating and living with rare diseases. Copyright © 2021 Haymarket Media, Inc. All Rights Reserved en Mon, 2 Nov 2026 00:00:00 +0000 Mon, 2 Nov 2026 18:56:31 +0000 https://www.rarediseaseadvisor.com/ Rare Care Podcast https://image.simplecastcdn.com/images/646a6801-ed4d-4198-9903-562a94e36077/322c078d-d984-4bdf-856a-31c8556b2b1d/3000x3000/cropped_1791907818393.jpg?aid=rss_feed https://www.rarediseaseadvisor.com/ episodic Rare Disease Advisor's Rare Care podcast features conversations with experts, healthcare providers, patients, caregivers, and advocates about treating and living with rare diseases. Rare Disease Advisor false https://feeds.simplecast.com/stlmRcU_ Rare Disease Advisor michael.nace@haymarketmedia.com 212e15d1-2040-4531-bbea-51bf07026626 An Interview With Theresa Strong, PhD, Director of Research Programs at the Foundation for Prader-Willi Research Mon, 2 Nov 2026 00:00:00 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ An Interview With Theresa Strong, PhD, Director of Research Programs at the Foundation for Prader-Willi Research Rare Disease Advisor 00:11:25 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Theresa Strong, PhD, of the Foundation for Prader-Willi Research—which is the recipient of NORD's 2026 Abbey S. Meyers Leadership Award. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Theresa Strong, PhD, of the Foundation for Prader-Willi Research—which is the recipient of NORD's 2026 Abbey S. Meyers Leadership Award. false full 247 d4b667ee-2e2a-42c0-8245-55fb9c51e356 An Interview With Rebecca Aune, Director of Education Programs at NORD Mon, 26 Oct 2026 16:38:03 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ An Interview With Rebecca Aune, Director of Education Programs at NORD Rare Disease Advisor 00:10:12 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rebecca Aune, director of education programs at the National Organization for Rare Disorders (NORD), about Rare Research Launchpad. The free, self-paced online series–designed to introduce students and early-career scientists to research and career opportunities–uses cystic fibrosis and Krabbe disease as real-world case studies. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rebecca Aune, director of education programs at the National Organization for Rare Disorders (NORD), about Rare Research Launchpad. The free, self-paced online series–designed to introduce students and early-career scientists to research and career opportunities–uses cystic fibrosis and Krabbe disease as real-world case studies. false full 246 87ca4328-cca4-461a-8dde-6204256c93e6 An Interview With High-School Senior Aarush Shah, Cofounder of the Rare Disease Platform OAI Nexus Larry Luxner, senior correspoondent for Rare Disease Advisor, interviews Aarush Shah, a high-school senior who, along with classmate Veer Chandwani, recently established OAI Nexus, the first public AI platform built exclusively for rare diseases.


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]]> Mon, 5 Oct 2026 18:16:24 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspoondent for Rare Disease Advisor, interviews Aarush Shah, a high-school senior who, along with classmate Veer Chandwani, recently established OAI Nexus, the first public AI platform built exclusively for rare diseases.


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]]> An Interview With High-School Senior Aarush Shah, Cofounder of the Rare Disease Platform OAI Nexus Rare Disease Advisor 00:12:37 Larry Luxner, senior correspoondent for Rare Disease Advisor, interviews Aarush Shah, a high-school senior who, along with classmate Veer Chandwani, recently established OAI Nexus, the first public AI platform built exclusively for rare diseases. Larry Luxner, senior correspoondent for Rare Disease Advisor, interviews Aarush Shah, a high-school senior who, along with classmate Veer Chandwani, recently established OAI Nexus, the first public AI platform built exclusively for rare diseases. false full 245 f10fa75f-fc55-40bd-8226-169a1ad29711 An Interview With Dr. Doug Flora on How AI Can Help Diagnose and Treat Cancer Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Doug Flora, MD, about his new book, "Rebooting Cancer Care: Can AI Make Care More Human Again?"


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]]> Mon, 28 Sep 2026 18:09:08 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Doug Flora, MD, about his new book, "Rebooting Cancer Care: Can AI Make Care More Human Again?"


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]]> An Interview With Dr. Doug Flora on How AI Can Help Diagnose and Treat Cancer Rare Disease Advisor 00:13:58 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Doug Flora, MD, about his new book, "Rebooting Cancer Care: Can AI Make Care More Human Again?" Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Doug Flora, MD, about his new book, "Rebooting Cancer Care: Can AI Make Care More Human Again?" false full 244 678efa34-7ed6-43aa-8dcc-9a4b86ce2f71 An Interview With Donna Appell, Founder of the Hermansky-Pudlak Syndrome Network Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Donna Appell, founder and executive director of the Hermansky-Pudlak Syndrome Network. Patients with the most common type of this rare disease always develop pulmonary fibrosis.


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]]> Mon, 21 Sep 2026 15:17:17 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Donna Appell, founder and executive director of the Hermansky-Pudlak Syndrome Network. Patients with the most common type of this rare disease always develop pulmonary fibrosis.


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]]> An Interview With Donna Appell, Founder of the Hermansky-Pudlak Syndrome Network Rare Disease Advisor 00:09:03 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Donna Appell, founder and executive director of the Hermansky-Pudlak Syndrome Network. Patients with the most common type of this rare disease always develop pulmonary fibrosis. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Donna Appell, founder and executive director of the Hermansky-Pudlak Syndrome Network. Patients with the most common type of this rare disease always develop pulmonary fibrosis. false full 243 a81aa8c8-707a-4507-80e1-11a0721c9cc3 An Interview With Rich Savino, Grandfather of a Boy With Duchenne Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rich Savino, a New Jersey grandfather of a boy with Duchenne muscular dystrophy. Savino, 71, is among a growing number of grandparents becoming advocates for patients affected by DMD.


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]]> Mon, 14 Sep 2026 15:51:45 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rich Savino, a New Jersey grandfather of a boy with Duchenne muscular dystrophy. Savino, 71, is among a growing number of grandparents becoming advocates for patients affected by DMD.


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]]> An Interview With Rich Savino, Grandfather of a Boy With Duchenne Rare Disease Advisor 00:14:25 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rich Savino, a New Jersey grandfather of a boy with Duchenne muscular dystrophy. Savino, 71, is among a growing number of grandparents becoming advocates for patients affected by DMD. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rich Savino, a New Jersey grandfather of a boy with Duchenne muscular dystrophy. Savino, 71, is among a growing number of grandparents becoming advocates for patients affected by DMD. false full 242 22c1c2fb-b9d1-4271-b7e2-ebaa418055f3 An Interview With Oncologist and Podcaster Kimberly Ku, MD, on 'Empathetic Communications' Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kimberly Ku, MD, an oncologist with Illinois Cancer Center and host of the podcast "Val-You Based Care,"


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]]> Wed, 9 Sep 2026 14:11:17 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kimberly Ku, MD, an oncologist with Illinois Cancer Center and host of the podcast "Val-You Based Care,"


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]]> An Interview With Oncologist and Podcaster Kimberly Ku, MD, on 'Empathetic Communications' Rare Disease Advisor 00:14:21 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kimberly Ku, MD, an oncologist with Illinois Cancer Center and host of the podcast "Val-You Based Care," Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kimberly Ku, MD, an oncologist with Illinois Cancer Center and host of the podcast "Val-You Based Care," false full 241 b61cb02b-ccbd-4a80-9ae7-f6892bcd3679 An Interview With Christine Clemson, PhD, of Entrada Therapeutics Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Christine Clemson, PhD, senior vice-president and global head of medical affairs at Entrada Therapeutics, about exon skipping therapies in Duchenne.


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]]> Thu, 3 Sep 2026 14:07:16 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Christine Clemson, PhD, senior vice-president and global head of medical affairs at Entrada Therapeutics, about exon skipping therapies in Duchenne.


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]]> An Interview With Christine Clemson, PhD, of Entrada Therapeutics Rare Disease Advisor 00:11:48 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Christine Clemson, PhD, senior vice-president and global head of medical affairs at Entrada Therapeutics, about exon skipping therapies in Duchenne. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Christine Clemson, PhD, senior vice-president and global head of medical affairs at Entrada Therapeutics, about exon skipping therapies in Duchenne. false full 240 d480302e-c3f9-4c69-a2e6-b40a745bb773 An Interview With Avril Daly, President of Eurordis-Rare Diseases Europe Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Avril Daly, president of Paris-based Eurordis-Rare Diseases Europe, on how the EU is falling behind in clinical trials for rare diseases.


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]]> Mon, 24 Aug 2026 18:09:23 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Avril Daly, president of Paris-based Eurordis-Rare Diseases Europe, on how the EU is falling behind in clinical trials for rare diseases.


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]]> An Interview With Avril Daly, President of Eurordis-Rare Diseases Europe Rare Disease Advisor 00:14:03 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Avril Daly, president of Paris-based Eurordis-Rare Diseases Europe, on how the EU is falling behind in clinical trials for rare diseases. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Avril Daly, president of Paris-based Eurordis-Rare Diseases Europe, on how the EU is falling behind in clinical trials for rare diseases. false full 239 d361c611-4538-447f-b611-d2f6ade4b23d An Interview With Jim Palma, CEO of TargetCancer Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jim Palma, CEO of the TargetCancer Foundation, a nonprofit organization that focuses on finding treatments for rare cancers.


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]]> Wed, 19 Aug 2026 20:14:36 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jim Palma, CEO of the TargetCancer Foundation, a nonprofit organization that focuses on finding treatments for rare cancers.


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]]> An Interview With Jim Palma, CEO of TargetCancer Rare Disease Advisor 00:09:03 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jim Palma, CEO of the TargetCancer Foundation, a nonprofit organization that focuses on finding treatments for rare cancers. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jim Palma, CEO of the TargetCancer Foundation, a nonprofit organization that focuses on finding treatments for rare cancers. false full 238 837826e2-7183-48ae-847a-cf6798b55aab An Interview With Dr. Paul Esteso on Cardiac Health in Duchenne Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Duchenne expert Paul Esteso, MD, PhD, medical director of the cardiac antithrombosis management program at Boston Children's Hospital.


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]]> Tue, 11 Aug 2026 18:43:06 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Duchenne expert Paul Esteso, MD, PhD, medical director of the cardiac antithrombosis management program at Boston Children's Hospital.


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]]> An Interview With Dr. Paul Esteso on Cardiac Health in Duchenne Rare Disease Advisor 00:11:41 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Duchenne expert Paul Esteso, MD, PhD, medical director of the cardiac antithrombosis management program at Boston Children's Hospital. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Duchenne expert Paul Esteso, MD, PhD, medical director of the cardiac antithrombosis management program at Boston Children's Hospital. false full 237 109943c3-ff42-4ab4-b652-d23eea9eea31 An Interview With Teresa Barnes, Founder of PF Warriors Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Teresa Barnes, founder of PF Warriors—a global support network that provides education, inspiration and hope to individuals and families affected by pulmonary fibrosis.


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]]> Mon, 3 Aug 2026 17:32:49 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Teresa Barnes, founder of PF Warriors—a global support network that provides education, inspiration and hope to individuals and families affected by pulmonary fibrosis.


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]]> An Interview With Teresa Barnes, Founder of PF Warriors Rare Disease Advisor 00:12:48 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Teresa Barnes, founder of PF Warriors—a global support network that provides education, inspiration and hope to individuals and families affected by pulmonary fibrosis. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Teresa Barnes, founder of PF Warriors—a global support network that provides education, inspiration and hope to individuals and families affected by pulmonary fibrosis. false full 236 0a343df9-8079-4a40-bbe4-2ab1c4c0acb9 An Interview WIth Dr. Martina Cornel, President of the European Society of Human Genetics Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Martina Cornel, MD, PhD, about the importance of adopting standardized newborn screening for rare diseases throughout Europe.


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]]> Mon, 27 Jul 2026 18:04:09 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Martina Cornel, MD, PhD, about the importance of adopting standardized newborn screening for rare diseases throughout Europe.


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]]> An Interview WIth Dr. Martina Cornel, President of the European Society of Human Genetics Rare Disease Advisor 00:16:08 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Martina Cornel, MD, PhD, about the importance of adopting standardized newborn screening for rare diseases throughout Europe. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Martina Cornel, MD, PhD, about the importance of adopting standardized newborn screening for rare diseases throughout Europe. false full 235 8b9dcc2a-7810-44d0-8f25-89ea20fb0613 An Interview WIth Diane Zipursky Quale of the Bladder Cancer Advocacy Network Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Diane Zipursky Quale, who founded the Bladder Cancer Advocacy Network 20 years ago with her late husband after he developed bladder cancer.


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]]> Mon, 20 Jul 2026 19:44:14 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Diane Zipursky Quale, who founded the Bladder Cancer Advocacy Network 20 years ago with her late husband after he developed bladder cancer.


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]]> An Interview WIth Diane Zipursky Quale of the Bladder Cancer Advocacy Network Rare Disease Advisor 00:14:00 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Diane Zipursky Quale, who founded the Bladder Cancer Advocacy Network 20 years ago with her late husband after he developed bladder cancer. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Diane Zipursky Quale, who founded the Bladder Cancer Advocacy Network 20 years ago with her late husband after he developed bladder cancer. false full 234 1d74fa4b-aa94-4e68-8a65-4f259c458733 An Interview With AI Expert Dr. Laurah Turner on Artificial Intelligence in Medical Education Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Laurah Turner, PhD, associate dean for artificial intelligence and educational informatics at the University of Cincinnati College of Medicine.


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]]> Mon, 13 Jul 2026 15:03:07 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Laurah Turner, PhD, associate dean for artificial intelligence and educational informatics at the University of Cincinnati College of Medicine.


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]]> An Interview With AI Expert Dr. Laurah Turner on Artificial Intelligence in Medical Education Rare Disease Advisor 00:10:03 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Laurah Turner, PhD, associate dean for artificial intelligence and educational informatics at the University of Cincinnati College of Medicine. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Laurah Turner, PhD, associate dean for artificial intelligence and educational informatics at the University of Cincinnati College of Medicine. false full 233 3d10621e-2722-4cd1-b25f-f69352b68806 An Interview With John MacMahon, CEO of CytoKind, on the Benefits of Artificial Sunlight Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John MacMahon, a New Hampshire-based medical devices company that specializes in phototherapy to treat fatigue in people with multiple sclerosis.


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]]> Mon, 6 Jul 2026 15:19:47 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John MacMahon, a New Hampshire-based medical devices company that specializes in phototherapy to treat fatigue in people with multiple sclerosis.


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]]> An Interview With John MacMahon, CEO of CytoKind, on the Benefits of Artificial Sunlight Rare Disease Advisor 00:16:20 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John MacMahon, a New Hampshire-based medical devices company that specializes in phototherapy to treat fatigue in people with multiple sclerosis. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John MacMahon, a New Hampshire-based medical devices company that specializes in phototherapy to treat fatigue in people with multiple sclerosis. false full 232 cf499886-f302-4b16-97a1-59a18edbf041 An Interview With Dr. Eric Small, Former President of ASCO Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Eric Small, MD, who recently stepped down as president of the American Society of Clinical Oncology (ASCO).


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]]> Mon, 29 Jun 2026 14:56:59 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Eric Small, MD, who recently stepped down as president of the American Society of Clinical Oncology (ASCO).


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]]> An Interview With Dr. Eric Small, Former President of ASCO Rare Disease Advisor 00:14:58 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Eric Small, MD, who recently stepped down as president of the American Society of Clinical Oncology (ASCO). Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Eric Small, MD, who recently stepped down as president of the American Society of Clinical Oncology (ASCO). false full 231 1c5baadb-5e96-4708-97c6-e2797627302f An Interview With Jessie Dubief, Social Research Director at Eurordis, on Mental Health in Rare Diseases Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jessie Dubief, social research director of Eurordis, about the organization's new survey on the importance of addressing mental health among both patients and caregivers affected by rare diseases.


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]]> Tue, 23 Jun 2026 14:31:17 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jessie Dubief, social research director of Eurordis, about the organization's new survey on the importance of addressing mental health among both patients and caregivers affected by rare diseases.


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]]> An Interview With Jessie Dubief, Social Research Director at Eurordis, on Mental Health in Rare Diseases Rare Disease Advisor 00:13:54 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jessie Dubief, social research director of Eurordis, about the organization's new survey on the importance of addressing mental health among both patients and caregivers affected by rare diseases. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jessie Dubief, social research director of Eurordis, about the organization's new survey on the importance of addressing mental health among both patients and caregivers affected by rare diseases. false full 230 fd3f9a12-1c24-40a4-8f5d-54ce9ed025cd An Interview With Naomi Aziz, Patient Advocacy and Engagement Lead at the Endometrial Cancer Research Foundation Tue, 16 Jun 2026 14:39:37 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ An Interview With Naomi Aziz, Patient Advocacy and Engagement Lead at the Endometrial Cancer Research Foundation Rare Disease Advisor 00:21:46 false full 229 d20088fd-5782-4b91-a40f-3db671c34a19 An Interview With Naomi Aziz, Patient Advocacy and Engagement Lead at the Endometrial Cancer Research Foundation Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Naomi Aziz, patient advocacy and engagement lead at the Endometrial Cancer Research Foundation. June is Uterine Cancer Awareness Month, and endometrial cancer now ranks as the nation's most common gynecologic cancer.


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]]> Tue, 16 Jun 2026 14:39:37 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Naomi Aziz, patient advocacy and engagement lead at the Endometrial Cancer Research Foundation. June is Uterine Cancer Awareness Month, and endometrial cancer now ranks as the nation's most common gynecologic cancer.


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]]> An Interview With Naomi Aziz, Patient Advocacy and Engagement Lead at the Endometrial Cancer Research Foundation Rare Disease Advisor 00:21:46 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Naomi Aziz, patient advocacy and engagement lead at the Endometrial Cancer Research Foundation. June is Uterine Cancer Awareness Month, and endometrial cancer now ranks as the nation's most common gynecologic cancer. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Naomi Aziz, patient advocacy and engagement lead at the Endometrial Cancer Research Foundation. June is Uterine Cancer Awareness Month, and endometrial cancer now ranks as the nation's most common gynecologic cancer. false full 229 43d0f869-784c-482b-9820-690229ff504d An Interview With Dr. Michelle Ng Gong, New President of the American Thoracic Society Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Michelle Ng Gong, MD, president of the American Thoracic Society (ATS). Dr. Gong formally replaced Raed Dweik, MD, at the ATS 2026 conference in Orlando, Florida.


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]]> Tue, 9 Jun 2026 17:11:23 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Michelle Ng Gong, MD, president of the American Thoracic Society (ATS). Dr. Gong formally replaced Raed Dweik, MD, at the ATS 2026 conference in Orlando, Florida.


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]]> An Interview With Dr. Michelle Ng Gong, New President of the American Thoracic Society Rare Disease Advisor 00:11:07 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Michelle Ng Gong, MD, president of the American Thoracic Society (ATS). Dr. Gong formally replaced Raed Dweik, MD, at the ATS 2026 conference in Orlando, Florida. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Michelle Ng Gong, MD, president of the American Thoracic Society (ATS). Dr. Gong formally replaced Raed Dweik, MD, at the ATS 2026 conference in Orlando, Florida. false full 228 d633da55-a768-421b-bc04-60125bc0086e An Interview With Dr. Andrew Wilson, Scientific Director of the Alpha-1 Foundation Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrew Wilson, MD, scientific director of the Alpha-1 Foundation, about the latest therapies to treat alpha-1 antitrypsin deficiency, an incurable genetic disease that causes both lung and liver damage.


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]]> Sun, 31 May 2026 17:39:06 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrew Wilson, MD, scientific director of the Alpha-1 Foundation, about the latest therapies to treat alpha-1 antitrypsin deficiency, an incurable genetic disease that causes both lung and liver damage.


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]]> An Interview With Dr. Andrew Wilson, Scientific Director of the Alpha-1 Foundation Rare Disease Advisor 00:07:51 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrew Wilson, MD, scientific director of the Alpha-1 Foundation, about the latest therapies to treat alpha-1 antitrypsin deficiency, an incurable genetic disease that causes both lung and liver damage. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrew Wilson, MD, scientific director of the Alpha-1 Foundation, about the latest therapies to treat alpha-1 antitrypsin deficiency, an incurable genetic disease that causes both lung and liver damage. false full 227 0b60310d-2486-411e-b849-85b676a918c6 An Interview With Dr. Vallerie McLoughlin, Director of the University of Michigan's Pulmonary Hypertension Program Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Vallerie McLoughlin, MD, director of the Pulmonary Hypertension Program at the University of Michigan-Ann Arbor, about results of a phase 3 trial for ralinepag to treat pulmonary arterial hypertension.


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]]> Tue, 26 May 2026 14:35:30 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Vallerie McLoughlin, MD, director of the Pulmonary Hypertension Program at the University of Michigan-Ann Arbor, about results of a phase 3 trial for ralinepag to treat pulmonary arterial hypertension.


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]]> An Interview With Dr. Vallerie McLoughlin, Director of the University of Michigan's Pulmonary Hypertension Program Rare Disease Advisor 00:09:17 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Vallerie McLoughlin, MD, director of the Pulmonary Hypertension Program at the University of Michigan-Ann Arbor, about results of a phase 3 trial for ralinepag to treat pulmonary arterial hypertension. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Vallerie McLoughlin, MD, director of the Pulmonary Hypertension Program at the University of Michigan-Ann Arbor, about results of a phase 3 trial for ralinepag to treat pulmonary arterial hypertension. false full 226 af6b4338-dc9d-4a9e-993d-1d5c25b8fe49 An Interview With Craig Martin, Founder and CEO of the Orphan Therapeutics Accelerator Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Craig Martin, founder and CEO of the Orphan Therapeutics Accelerator (OTXL) — a nonprofit biotech dedicated to advancing shelved clinical-stage therapies for ultrarare diseases.


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]]> Mon, 18 May 2026 19:28:00 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Craig Martin, founder and CEO of the Orphan Therapeutics Accelerator (OTXL) — a nonprofit biotech dedicated to advancing shelved clinical-stage therapies for ultrarare diseases.


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]]> An Interview With Craig Martin, Founder and CEO of the Orphan Therapeutics Accelerator Rare Disease Advisor 00:14:50 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Craig Martin, founder and CEO of the Orphan Therapeutics Accelerator (OTXL) — a nonprofit biotech dedicated to advancing shelved clinical-stage therapies for ultrarare diseases. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Craig Martin, founder and CEO of the Orphan Therapeutics Accelerator (OTXL) — a nonprofit biotech dedicated to advancing shelved clinical-stage therapies for ultrarare diseases. false full 225 4b3d953f-dd56-4453-8430-cadc592953c1 An Interview With Henriette Farkas, Director of the Hungarian Angioedema Reference Center in Budapest Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Henriette Farkas, MD, PhD, director of the Hungarian Angioedema Reference Center in Budapest, and a world expert on the treatment of HAE.


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]]> Thu, 14 May 2026 16:07:51 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Henriette Farkas, MD, PhD, director of the Hungarian Angioedema Reference Center in Budapest, and a world expert on the treatment of HAE.


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]]> An Interview With Henriette Farkas, Director of the Hungarian Angioedema Reference Center in Budapest Rare Disease Advisor 00:13:16 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Henriette Farkas, MD, PhD, director of the Hungarian Angioedema Reference Center in Budapest, and a world expert on the treatment of HAE. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Henriette Farkas, MD, PhD, director of the Hungarian Angioedema Reference Center in Budapest, and a world expert on the treatment of HAE. false full 224 4360e2ac-c57c-4267-9530-c6aca3296030 An Interview With Dr. Antón Blatnik on the Molecular Mechanisms Driving Neuromuscular Disease Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Antón Blatnik, PhD, who recently won a $150,000 grant from Cure SMA to study the molecular mechanisms that drive neuromuscular disease and gene expression.


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]]> Mon, 4 May 2026 14:57:02 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Antón Blatnik, PhD, who recently won a $150,000 grant from Cure SMA to study the molecular mechanisms that drive neuromuscular disease and gene expression.


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]]> An Interview With Dr. Antón Blatnik on the Molecular Mechanisms Driving Neuromuscular Disease Rare Disease Advisor 00:11:01 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Antón Blatnik, PhD, who recently won a $150,000 grant from Cure SMA to study the molecular mechanisms that drive neuromuscular disease and gene expression. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Antón Blatnik, PhD, who recently won a $150,000 grant from Cure SMA to study the molecular mechanisms that drive neuromuscular disease and gene expression. false full 223 23355301-bf29-4116-a614-c78a9ec2e5c7 An Interview With SMA Expert and Neurologist Dr. Kathryn Swoboda Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kathryn Swoboda, MD, faculty emerita at Massachusetts General Hospital and a neurologist and rare disease specialist who's been working on SMA for nearly 30 years.


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]]> Mon, 27 Apr 2026 15:08:30 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kathryn Swoboda, MD, faculty emerita at Massachusetts General Hospital and a neurologist and rare disease specialist who's been working on SMA for nearly 30 years.


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]]> An Interview With SMA Expert and Neurologist Dr. Kathryn Swoboda Rare Disease Advisor 00:14:32 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kathryn Swoboda, MD, faculty emerita at Massachusetts General Hospital and a neurologist and rare disease specialist who's been working on SMA for nearly 30 years. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kathryn Swoboda, MD, faculty emerita at Massachusetts General Hospital and a neurologist and rare disease specialist who's been working on SMA for nearly 30 years. false full 222 43b3bd57-27da-4848-96da-84644dcb9ab9 An Interview With Dutch Neurologist Ewout Groen of SMA Europe Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dutch neurologist Ewout Groen, PhD, a member of the Scientific Advisory Board of SMA Europe.


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]]> Mon, 20 Apr 2026 14:49:26 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dutch neurologist Ewout Groen, PhD, a member of the Scientific Advisory Board of SMA Europe.


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]]> An Interview With Dutch Neurologist Ewout Groen of SMA Europe Rare Disease Advisor 00:08:51 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dutch neurologist Ewout Groen, PhD, a member of the Scientific Advisory Board of SMA Europe. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dutch neurologist Ewout Groen, PhD, a member of the Scientific Advisory Board of SMA Europe. false full 221 f8bb9fd7-d1ca-4b66-8e21-afd7ea2f4096 An Interview With Dr. Jaime Moore on Obesity Medications and Neuromuscular Disease Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jaime Moore, MD, about weight loss drugs—specifically the role of GLP-1 receptor agonists in treating children with neuromuscular diseases and obesity.


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]]> Mon, 13 Apr 2026 14:09:25 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jaime Moore, MD, about weight loss drugs—specifically the role of GLP-1 receptor agonists in treating children with neuromuscular diseases and obesity.


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]]> An Interview With Dr. Jaime Moore on Obesity Medications and Neuromuscular Disease Rare Disease Advisor 00:14:11 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jaime Moore, MD, about weight loss drugs—specifically the role of GLP-1 receptor agonists in treating children with neuromuscular diseases and obesity. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jaime Moore, MD, about weight loss drugs—specifically the role of GLP-1 receptor agonists in treating children with neuromuscular diseases and obesity. false full 220 fb5e9c83-1f3f-472a-8a60-cdb1a46c3ad8 An Interview With Dr. Natalie Truba on the Psychological Aspects of Gene Therapy Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric psychologist Natalie Truba, PhD, on the psychological aspects of gene therapy in neuromuscular disease.


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]]> Tue, 7 Apr 2026 14:11:05 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric psychologist Natalie Truba, PhD, on the psychological aspects of gene therapy in neuromuscular disease.


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]]> An Interview With Dr. Natalie Truba on the Psychological Aspects of Gene Therapy Rare Disease Advisor 00:14:43 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric psychologist Natalie Truba, PhD, on the psychological aspects of gene therapy in neuromuscular disease. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric psychologist Natalie Truba, PhD, on the psychological aspects of gene therapy in neuromuscular disease. false full 219 82f32189-4400-4e45-a6bd-7e77b9d62025 An Interview With Donna Shipp on Her IgG4-RD Patient Journey Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Donna Shipp, a Boston-area nurse who was misdiagnosed with cancer, underwent surgery and later realized she had IgG4-RD. She now advocates on behalf of others with this rare disease.


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]]> Tue, 31 Mar 2026 14:36:25 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Donna Shipp, a Boston-area nurse who was misdiagnosed with cancer, underwent surgery and later realized she had IgG4-RD. She now advocates on behalf of others with this rare disease.


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]]> An Interview With Donna Shipp on Her IgG4-RD Patient Journey Rare Disease Advisor 00:14:26 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Donna Shipp, a Boston-area nurse who was misdiagnosed with cancer, underwent surgery and later realized she had IgG4-RD. She now advocates on behalf of others with this rare disease. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Donna Shipp, a Boston-area nurse who was misdiagnosed with cancer, underwent surgery and later realized she had IgG4-RD. She now advocates on behalf of others with this rare disease. false full 218 58dd3a17-67ef-4f86-b20e-8bea98aeb702 An Interview With Abby Bronson of Edgewise Therapeutics About Becker Muscular Dystrophy Awareness Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Abby Bronson, vice president of patient advocacy at Edgewise Therapeutics, about a new effort to raise awareness of Becker muscular dystrophy as a disease distinct from Duchenne muscular dystrophy.


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]]> Mon, 30 Mar 2026 15:18:39 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Abby Bronson, vice president of patient advocacy at Edgewise Therapeutics, about a new effort to raise awareness of Becker muscular dystrophy as a disease distinct from Duchenne muscular dystrophy.


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]]> An Interview With Abby Bronson of Edgewise Therapeutics About Becker Muscular Dystrophy Awareness Rare Disease Advisor 00:12:26 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Abby Bronson, vice president of patient advocacy at Edgewise Therapeutics, about a new effort to raise awareness of Becker muscular dystrophy as a disease distinct from Duchenne muscular dystrophy. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Abby Bronson, vice president of patient advocacy at Edgewise Therapeutics, about a new effort to raise awareness of Becker muscular dystrophy as a disease distinct from Duchenne muscular dystrophy. false full 217 308a9773-6f70-4d41-91f3-9af29531be70 An Interview With Allison Moore, Founder and CEO of the Hereditary Neuropathy Foundation Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Allison Moore, founder and CEO of the Hereditary Neuropathy Foundation. Moore was the winner of the Muscular Dystrophy Association's 2026 Donavon Decker Legacy Award for Community Impact in Research.


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]]> Mon, 23 Mar 2026 18:20:01 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Allison Moore, founder and CEO of the Hereditary Neuropathy Foundation. Moore was the winner of the Muscular Dystrophy Association's 2026 Donavon Decker Legacy Award for Community Impact in Research.


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]]> An Interview With Allison Moore, Founder and CEO of the Hereditary Neuropathy Foundation Rare Disease Advisor 00:10:05 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Allison Moore, founder and CEO of the Hereditary Neuropathy Foundation. Moore was the winner of the Muscular Dystrophy Association's 2026 Donavon Decker Legacy Award for Community Impact in Research. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Allison Moore, founder and CEO of the Hereditary Neuropathy Foundation. Moore was the winner of the Muscular Dystrophy Association's 2026 Donavon Decker Legacy Award for Community Impact in Research. false full 216 c735de80-fa35-4ca2-99e2-2c3f5c4ea70f An Interview With John Crowley, President and CEO of the Biotechnology Innovation Organization Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Crowley, president and CEO of the Biotechnology Innovation Organization (BIO), founder of Amicus Therapeutics, and father of 2 children with Pompe disease.


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]]> Tue, 17 Mar 2026 14:59:52 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Crowley, president and CEO of the Biotechnology Innovation Organization (BIO), founder of Amicus Therapeutics, and father of 2 children with Pompe disease.


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]]> An Interview With John Crowley, President and CEO of the Biotechnology Innovation Organization Rare Disease Advisor 00:14:23 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Crowley, president and CEO of the Biotechnology Innovation Organization (BIO), founder of Amicus Therapeutics, and father of 2 children with Pompe disease. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Crowley, president and CEO of the Biotechnology Innovation Organization (BIO), founder of Amicus Therapeutics, and father of 2 children with Pompe disease. false full 215 1f90a038-7335-4864-899f-281c2883f9a4 An Interview With Dr. Hyun Kim, Director of the University of Minnesota's Interstitial Lung Disease Program Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Hyun Kim, MD, professor of medicine and director of the University of Minnesota's Interstitial Lung Disease Program, about idiopathic pulmonary fibrosis.


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]]> Mon, 2 Mar 2026 20:26:38 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Hyun Kim, MD, professor of medicine and director of the University of Minnesota's Interstitial Lung Disease Program, about idiopathic pulmonary fibrosis.


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]]> An Interview With Dr. Hyun Kim, Director of the University of Minnesota's Interstitial Lung Disease Program Rare Disease Advisor 00:13:01 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Hyun Kim, MD, professor of medicine and director of the University of Minnesota's Interstitial Lung Disease Program, about idiopathic pulmonary fibrosis. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Hyun Kim, MD, professor of medicine and director of the University of Minnesota's Interstitial Lung Disease Program, about idiopathic pulmonary fibrosis. false full 214 956a1ffc-017d-4b14-9b62-133221c89dd5 An Interview With Andrea Wilson Woods, Founder of Blue Faery, a Nonprofit That Advocates for Patients With Hepatocellular Carcinoma Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Wilson Woods, founder of Blue Faery: The Adrienne Wilson Liver Cancer Association—a nonprofit that advocates for patients with hepatocellular carcinoma.


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]]> Tue, 24 Feb 2026 15:33:39 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Wilson Woods, founder of Blue Faery: The Adrienne Wilson Liver Cancer Association—a nonprofit that advocates for patients with hepatocellular carcinoma.


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]]> An Interview With Andrea Wilson Woods, Founder of Blue Faery, a Nonprofit That Advocates for Patients With Hepatocellular Carcinoma Rare Disease Advisor 00:13:21 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Wilson Woods, founder of Blue Faery: The Adrienne Wilson Liver Cancer Association—a nonprofit that advocates for patients with hepatocellular carcinoma. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Wilson Woods, founder of Blue Faery: The Adrienne Wilson Liver Cancer Association—a nonprofit that advocates for patients with hepatocellular carcinoma. false full 213 2bb01821-3362-4752-b0e7-ab217b884da1 An Interview With Dr. Michael Schilsky of the Yale School of Medicine, and an Expert on Wilson Disease Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Michael Shilsky, MD, of the Yale School of Medicine, on potential therapies for Wilson disease.


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]]> Tue, 17 Feb 2026 15:59:15 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Michael Shilsky, MD, of the Yale School of Medicine, on potential therapies for Wilson disease.


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]]> An Interview With Dr. Michael Schilsky of the Yale School of Medicine, and an Expert on Wilson Disease Rare Disease Advisor 00:10:57 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Michael Shilsky, MD, of the Yale School of Medicine, on potential therapies for Wilson disease. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Michael Shilsky, MD, of the Yale School of Medicine, on potential therapies for Wilson disease. false full 212 933ad5c8-2843-4c91-ab31-4bf62c077e6b An Interview With Yen Chen, PhD, on Brain Fog Among People With Scleroderma Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Yen Chen, PhD, of the University of Michigan, on the subject of cognitive dysfunction or "brain fog" among people with scleroderma.


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]]> Wed, 11 Feb 2026 15:41:34 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Yen Chen, PhD, of the University of Michigan, on the subject of cognitive dysfunction or "brain fog" among people with scleroderma.


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]]> An Interview With Yen Chen, PhD, on Brain Fog Among People With Scleroderma Rare Disease Advisor 00:12:23 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Yen Chen, PhD, of the University of Michigan, on the subject of cognitive dysfunction or "brain fog" among people with scleroderma. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Yen Chen, PhD, of the University of Michigan, on the subject of cognitive dysfunction or "brain fog" among people with scleroderma. false full 211 0eb71fc9-9ae7-43c6-be98-0d1527aa25e4 An Interview With Dr. Aleksander Krag on Diagnosing and Treating Alpha-1 Disease Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Danish hepatologist Aleksander Krag, MD, PhD, on the diagnosis and treatment of alpha-1 antitrypsin deficiency (AATD).


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]]> Mon, 2 Feb 2026 15:43:32 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Danish hepatologist Aleksander Krag, MD, PhD, on the diagnosis and treatment of alpha-1 antitrypsin deficiency (AATD).


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]]> An Interview With Dr. Aleksander Krag on Diagnosing and Treating Alpha-1 Disease Rare Disease Advisor 00:12:20 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Danish hepatologist Aleksander Krag, MD, PhD, on the diagnosis and treatment of alpha-1 antitrypsin deficiency (AATD). Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Danish hepatologist Aleksander Krag, MD, PhD, on the diagnosis and treatment of alpha-1 antitrypsin deficiency (AATD). false full 210 a24f0306-a92b-406d-8ab0-afd687e0c6d8 An Interview With Vesna Aleksovska, a Rare Disease Patient Advocate in North Macedonia Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Vesna Aleksovska, chair of the nonprofit organization Life With Challenges. Aleksovska, who has Gaucher disease, advocates for all rare disease patients in North Macedonia, a former Yugoslav republic.


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]]> Wed, 28 Jan 2026 19:23:09 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Vesna Aleksovska, chair of the nonprofit organization Life With Challenges. Aleksovska, who has Gaucher disease, advocates for all rare disease patients in North Macedonia, a former Yugoslav republic.


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]]> An Interview With Vesna Aleksovska, a Rare Disease Patient Advocate in North Macedonia Rare Disease Advisor 00:19:52 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Vesna Aleksovska, chair of the nonprofit organization Life With Challenges. Aleksovska, who has Gaucher disease, advocates for all rare disease patients in North Macedonia, a former Yugoslav republic. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Vesna Aleksovska, chair of the nonprofit organization Life With Challenges. Aleksovska, who has Gaucher disease, advocates for all rare disease patients in North Macedonia, a former Yugoslav republic. false full 209 c70f1d9f-af74-4202-a16f-7a60a332263a An Interview With Wes Michael, Founder of Rare Patient Voice Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Wes Michael, founder of Rare Patient Voice. Since 2013, RPV has offered patients and caregivers opportunities to share their input with companies developing products to improve lives.


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]]> Wed, 21 Jan 2026 19:03:42 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Wes Michael, founder of Rare Patient Voice. Since 2013, RPV has offered patients and caregivers opportunities to share their input with companies developing products to improve lives.


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]]> An Interview With Wes Michael, Founder of Rare Patient Voice Rare Disease Advisor 00:07:33 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Wes Michael, founder of Rare Patient Voice. Since 2013, RPV has offered patients and caregivers opportunities to share their input with companies developing products to improve lives. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Wes Michael, founder of Rare Patient Voice. Since 2013, RPV has offered patients and caregivers opportunities to share their input with companies developing products to improve lives. false full 208 bb2d07a3-ecae-41c8-9ef5-533875aa960f An Interview With Katharine Provencher, Director of Patient Advocacy at IgG4Ward! Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Katharine Provencher, director of patient advocacy at IgG4Ward!, a nonprofit that advocates for patients and caregivers affected by IgG4-RD.


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]]> Mon, 12 Jan 2026 17:08:21 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Katharine Provencher, director of patient advocacy at IgG4Ward!, a nonprofit that advocates for patients and caregivers affected by IgG4-RD.


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]]> An Interview With Katharine Provencher, Director of Patient Advocacy at IgG4Ward! Rare Disease Advisor 00:11:08 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Katharine Provencher, director of patient advocacy at IgG4Ward!, a nonprofit that advocates for patients and caregivers affected by IgG4-RD. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Katharine Provencher, director of patient advocacy at IgG4Ward!, a nonprofit that advocates for patients and caregivers affected by IgG4-RD. false full 207 b1fe705e-a8aa-4083-938c-e8dd2616628c An Interview With Cecilia Dueñas, PsyD, on Discrimination and Stigma She Encountered Before Getting Diagnosed With PBC Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Cecilia Dueñas, PsyD, on the PBC Research Foundation, and the discrimination and stigma she faced for years before getting diagnosed with the disease.


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]]> Mon, 5 Jan 2026 21:51:24 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Cecilia Dueñas, PsyD, on the PBC Research Foundation, and the discrimination and stigma she faced for years before getting diagnosed with the disease.


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]]> An Interview With Cecilia Dueñas, PsyD, on Discrimination and Stigma She Encountered Before Getting Diagnosed With PBC Rare Disease Advisor 00:12:22 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Cecilia Dueñas, PsyD, on the PBC Research Foundation, and the discrimination and stigma she faced for years before getting diagnosed with the disease. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Cecilia Dueñas, PsyD, on the PBC Research Foundation, and the discrimination and stigma she faced for years before getting diagnosed with the disease. false full 206 b1f46a12-c088-43b3-81a6-2919be9f0b41 An Interview With Sickle Cell Disease Patient Advocate Golie-Lorenzo Green Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Golie-Lorenzo Green, whose lifelong battle with sickle cell disease led him to advocate for others with the debilitating illness.


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]]> Tue, 30 Dec 2025 17:56:06 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Golie-Lorenzo Green, whose lifelong battle with sickle cell disease led him to advocate for others with the debilitating illness.


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]]> An Interview With Sickle Cell Disease Patient Advocate Golie-Lorenzo Green Rare Disease Advisor 00:13:17 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Golie-Lorenzo Green, whose lifelong battle with sickle cell disease led him to advocate for others with the debilitating illness. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Golie-Lorenzo Green, whose lifelong battle with sickle cell disease led him to advocate for others with the debilitating illness. false full 205 c4febc14-1047-4b2b-8fa5-c321688d6af3 An Interview With Jana Monaco, a NORD Patient Ambassador From Virginia Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jana Monaco, a NORD patient ambassador from Virginia who's made nationwide newborn screening her life's mission.


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]]> Mon, 22 Dec 2025 16:11:21 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jana Monaco, a NORD patient ambassador from Virginia who's made nationwide newborn screening her life's mission.


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]]> An Interview With Jana Monaco, a NORD Patient Ambassador From Virginia Rare Disease Advisor 00:14:55 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jana Monaco, a NORD patient ambassador from Virginia who's made nationwide newborn screening her life's mission. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jana Monaco, a NORD patient ambassador from Virginia who's made nationwide newborn screening her life's mission. false full 204 a81ba63a-92ed-40fd-803d-c7b92e06d9f4 An Interview With Dr. Matthew Might on How AI Could Transform Genome-Guided Medicine Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Alabama computer scientist Matthew Might, PhD, on how his son's death from a rare genetic disease led him to become an expert in AI and precision medicine.


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]]> Wed, 17 Dec 2025 20:42:01 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Alabama computer scientist Matthew Might, PhD, on how his son's death from a rare genetic disease led him to become an expert in AI and precision medicine.


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]]> An Interview With Dr. Matthew Might on How AI Could Transform Genome-Guided Medicine Rare Disease Advisor 00:10:53 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Alabama computer scientist Matthew Might, PhD, on how his son's death from a rare genetic disease led him to become an expert in AI and precision medicine. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Alabama computer scientist Matthew Might, PhD, on how his son's death from a rare genetic disease led him to become an expert in AI and precision medicine. false full 203 f7903052-2318-4af8-815b-92c6ba1af9c6 An Interview With Dr. Sarah Chang on the Patient and Caregiver Burden of TK2d Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sarah Chang, PhD, about the patient and caregiver burden associated with the ultra-rare mitochondrial disease TK2d.


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]]> Mon, 8 Dec 2025 15:23:40 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sarah Chang, PhD, about the patient and caregiver burden associated with the ultra-rare mitochondrial disease TK2d.


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]]> An Interview With Dr. Sarah Chang on the Patient and Caregiver Burden of TK2d Rare Disease Advisor 00:10:20 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sarah Chang, PhD, about the patient and caregiver burden associated with the ultra-rare mitochondrial disease TK2d. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sarah Chang, PhD, about the patient and caregiver burden associated with the ultra-rare mitochondrial disease TK2d. false full 202 08ca4431-1a7f-436f-9318-8865bd989892 An Interview With Rheumatologist Jinoos Yazdany on the Dangers of Artificial Intelligence Larry Luxner, senior correspondent for Rare Disease Advisor, interviews rheumatologist Jinoos Yazdany, MD, on the potentially catastrophic medical, ethical and legal consequences of relying too much on AI.


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]]> Wed, 3 Dec 2025 15:00:41 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews rheumatologist Jinoos Yazdany, MD, on the potentially catastrophic medical, ethical and legal consequences of relying too much on AI.


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]]> An Interview With Rheumatologist Jinoos Yazdany on the Dangers of Artificial Intelligence Rare Disease Advisor 00:16:42 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews rheumatologist Jinoos Yazdany, MD, on the potentially catastrophic medical, ethical and legal consequences of relying too much on AI. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews rheumatologist Jinoos Yazdany, MD, on the potentially catastrophic medical, ethical and legal consequences of relying too much on AI. false full 201 b1c697c4-221f-484f-8a9b-604bcb8ae023 An Interview With Dr. Barry Byrne, Director of the UF Powell Gene Therapy Center Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Barry Byrne, MD, PhD, an expert on Pompe disease and director of the University of Florida's Powell Gene Therapy Center.


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]]> Mon, 24 Nov 2025 16:06:59 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Barry Byrne, MD, PhD, an expert on Pompe disease and director of the University of Florida's Powell Gene Therapy Center.


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]]> An Interview With Dr. Barry Byrne, Director of the UF Powell Gene Therapy Center Rare Disease Advisor 00:12:26 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Barry Byrne, MD, PhD, an expert on Pompe disease and director of the University of Florida's Powell Gene Therapy Center. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Barry Byrne, MD, PhD, an expert on Pompe disease and director of the University of Florida's Powell Gene Therapy Center. false full 200 8157e811-cd31-4534-83b7-a15f04e7ed46 An Interview With Rheumatologist Eric Matteson, Winner of the ACR's 2025 Presidential Gold Medal Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Eric Matteson, MD, of the Mayo Clinic and winner of the American College of Rheumatology's 2025 Presidential Gold Medal.


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]]> Wed, 19 Nov 2025 17:08:05 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Eric Matteson, MD, of the Mayo Clinic and winner of the American College of Rheumatology's 2025 Presidential Gold Medal.


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]]> An Interview With Rheumatologist Eric Matteson, Winner of the ACR's 2025 Presidential Gold Medal Rare Disease Advisor 00:16:33 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Eric Matteson, MD, of the Mayo Clinic and winner of the American College of Rheumatology's 2025 Presidential Gold Medal. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Eric Matteson, MD, of the Mayo Clinic and winner of the American College of Rheumatology's 2025 Presidential Gold Medal. false full 199 056fa03f-e1d7-4af7-b3de-764c456cb9a1 An Interview With New Mexico Patient Ambassador Karen Smoot of the Pulmonary Fibrosis Foundation Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Karen Smoot, a resident of New Mexico who has both idiopathic pulmonary fibrosis and pulmonary arterial hypertension. Karen is a patient ambassador for the Pulmonary Fibrosis Foundation.


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]]> Tue, 11 Nov 2025 14:33:20 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Karen Smoot, a resident of New Mexico who has both idiopathic pulmonary fibrosis and pulmonary arterial hypertension. Karen is a patient ambassador for the Pulmonary Fibrosis Foundation.


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]]> An Interview With New Mexico Patient Ambassador Karen Smoot of the Pulmonary Fibrosis Foundation Rare Disease Advisor 00:15:49 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Karen Smoot, a resident of New Mexico who has both idiopathic pulmonary fibrosis and pulmonary arterial hypertension. Karen is a patient ambassador for the Pulmonary Fibrosis Foundation. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Karen Smoot, a resident of New Mexico who has both idiopathic pulmonary fibrosis and pulmonary arterial hypertension. Karen is a patient ambassador for the Pulmonary Fibrosis Foundation. false full 198 f0c6786e-5765-466e-9e71-caed5bea5c9b An Interview With Gabriela Romanow, Founder of Rare Vision, a Project That Helps Artists With Rare Neuroimmune Diseases Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Gabriela Romanow, founder of Boston, Massachusetts-based Rare Vision. The project showcases works by artists with rare neuroimmune diseases such as NMOSD, MOGAD and transverse myelitis.


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]]> Tue, 4 Nov 2025 15:12:42 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Gabriela Romanow, founder of Boston, Massachusetts-based Rare Vision. The project showcases works by artists with rare neuroimmune diseases such as NMOSD, MOGAD and transverse myelitis.


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]]> An Interview With Gabriela Romanow, Founder of Rare Vision, a Project That Helps Artists With Rare Neuroimmune Diseases Rare Disease Advisor 00:08:22 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Gabriela Romanow, founder of Boston, Massachusetts-based Rare Vision. The project showcases works by artists with rare neuroimmune diseases such as NMOSD, MOGAD and transverse myelitis. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Gabriela Romanow, founder of Boston, Massachusetts-based Rare Vision. The project showcases works by artists with rare neuroimmune diseases such as NMOSD, MOGAD and transverse myelitis. false full 197 a44a08a8-9610-4dc1-bff8-dc4acabadd82 An Interview With Lisa Shea, Director of Global Patient Advocacy and Engagement for Immunology at Johnson & Johnson Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lisa Shea, director of global patient advocacy and engagement for immunology at Johnson & Johnson, about the experiences of patients affected by HDFN and FNAIT.


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]]> Wed, 29 Oct 2025 13:18:17 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lisa Shea, director of global patient advocacy and engagement for immunology at Johnson & Johnson, about the experiences of patients affected by HDFN and FNAIT.


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]]> An Interview With Lisa Shea, Director of Global Patient Advocacy and Engagement for Immunology at Johnson & Johnson Rare Disease Advisor 00:07:34 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lisa Shea, director of global patient advocacy and engagement for immunology at Johnson & Johnson, about the experiences of patients affected by HDFN and FNAIT. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lisa Shea, director of global patient advocacy and engagement for immunology at Johnson & Johnson, about the experiences of patients affected by HDFN and FNAIT. false full 196 443bb460-70c1-4cc5-89bf-a1bb326c5286 An Interview With Dr. Nicole Lamanna, Leukemia Specialist at Columbia University Medical Center Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Nicole Lamanna, MD, a leukemia physician specializing in CLL treatment at Columbia University Medical Center in New York City.


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]]> Wed, 22 Oct 2025 15:30:20 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Nicole Lamanna, MD, a leukemia physician specializing in CLL treatment at Columbia University Medical Center in New York City.


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]]> An Interview With Dr. Nicole Lamanna, Leukemia Specialist at Columbia University Medical Center Rare Disease Advisor 00:11:32 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Nicole Lamanna, MD, a leukemia physician specializing in CLL treatment at Columbia University Medical Center in New York City. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Nicole Lamanna, MD, a leukemia physician specializing in CLL treatment at Columbia University Medical Center in New York City. false full 195 19e263bc-407c-4b1e-9517-4de972bd44d5 An Interview With Dr. May Lee Tjoa, Maternal and Fetal Immunology Expert at Johnson & Johnson Larry Luxner, senior correspondent for Rare Disease Advisor, interviews May Lee Tjoa, PhD, senior global medical affairs leader for Johnson & Johnson's nipocalimab and maternal-fetal immunology division.


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]]> Wed, 15 Oct 2025 15:56:04 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews May Lee Tjoa, PhD, senior global medical affairs leader for Johnson & Johnson's nipocalimab and maternal-fetal immunology division.


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]]> An Interview With Dr. May Lee Tjoa, Maternal and Fetal Immunology Expert at Johnson & Johnson Rare Disease Advisor 00:11:11 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews May Lee Tjoa, PhD, senior global medical affairs leader for Johnson & Johnson's nipocalimab and maternal-fetal immunology division. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews May Lee Tjoa, PhD, senior global medical affairs leader for Johnson & Johnson's nipocalimab and maternal-fetal immunology division. false full 194 dcbb266f-d1bf-47b1-a46f-9049a0416cdc An Interview With Dr. John Mascarenhas, Professor at New York's Icahn School of Medicine Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Mascarenhas, MD, a professor with the Icahn School of Medicine at Mount Sinai in New York, on advancing care in myelofibrosis.


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]]> Fri, 10 Oct 2025 13:06:13 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Mascarenhas, MD, a professor with the Icahn School of Medicine at Mount Sinai in New York, on advancing care in myelofibrosis.


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]]> An Interview With Dr. John Mascarenhas, Professor at New York's Icahn School of Medicine Rare Disease Advisor 00:17:03 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Mascarenhas, MD, a professor with the Icahn School of Medicine at Mount Sinai in New York, on advancing care in myelofibrosis. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Mascarenhas, MD, a professor with the Icahn School of Medicine at Mount Sinai in New York, on advancing care in myelofibrosis. false full 193 cf038132-a35a-436e-a2d3-dd4586f8b546 An Interview With Catherine Miller, PharmD, of Intellia Therapeutics on an Experimental Gene Editing Therapy for HAE Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Catherine Miller, PharmD, global medical affairs lead for hereditary angioedema (HAE) at Intellia Therapeutics, on an experimental gene editing therapy known as lonvo-Z.


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]]> Wed, 1 Oct 2025 14:02:38 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Catherine Miller, PharmD, global medical affairs lead for hereditary angioedema (HAE) at Intellia Therapeutics, on an experimental gene editing therapy known as lonvo-Z.


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]]> An Interview With Catherine Miller, PharmD, of Intellia Therapeutics on an Experimental Gene Editing Therapy for HAE Rare Disease Advisor 00:13:25 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Catherine Miller, PharmD, global medical affairs lead for hereditary angioedema (HAE) at Intellia Therapeutics, on an experimental gene editing therapy known as lonvo-Z. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Catherine Miller, PharmD, global medical affairs lead for hereditary angioedema (HAE) at Intellia Therapeutics, on an experimental gene editing therapy known as lonvo-Z. false full 192 21d58def-33cd-4200-869d-50ec99b0606d An Interview With Dr. Shoshana Revel-Vilk, Director of the Gaucher Unit at Israel's Shaare Zedek Medical Center Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Shoshana Revel-Vilk, MD, director of the Gaucher unit at Shaare Zedek Medical Center in Jerusalem, Israel.


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]]> Wed, 24 Sep 2025 13:58:08 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Shoshana Revel-Vilk, MD, director of the Gaucher unit at Shaare Zedek Medical Center in Jerusalem, Israel.


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]]> An Interview With Dr. Shoshana Revel-Vilk, Director of the Gaucher Unit at Israel's Shaare Zedek Medical Center Rare Disease Advisor 00:16:13 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Shoshana Revel-Vilk, MD, director of the Gaucher unit at Shaare Zedek Medical Center in Jerusalem, Israel. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Shoshana Revel-Vilk, MD, director of the Gaucher unit at Shaare Zedek Medical Center in Jerusalem, Israel. false full 191 b97bc67b-3a2a-4bec-8abf-105b4387f274 An Interview With Nikki McIntosh, Founder of Rare Mamas and SMA Patient Advocate Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Nikki McIntoch, mother of a boy with spinal muscular atrophy (SMA) and founder of the advocacy group Rare Mamas.


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]]> Tue, 16 Sep 2025 15:44:18 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Nikki McIntoch, mother of a boy with spinal muscular atrophy (SMA) and founder of the advocacy group Rare Mamas.


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]]> An Interview With Nikki McIntosh, Founder of Rare Mamas and SMA Patient Advocate Rare Disease Advisor 00:11:26 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Nikki McIntoch, mother of a boy with spinal muscular atrophy (SMA) and founder of the advocacy group Rare Mamas. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Nikki McIntoch, mother of a boy with spinal muscular atrophy (SMA) and founder of the advocacy group Rare Mamas. false full 190 17b96378-6d0d-42c5-8baf-0d664ff0356f An Interview With Dr. Jennifer Brown, Director of the CLL Center at Dana-Farber Cancer Institute Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jennifer Brown, MD, PhD, director of the CLL Center at Dana-Farber Cancer Institute in Boston, Massachusetts, and winner of the 2025 Michael J. Keating Outstanding Achievement Award.


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]]> Mon, 8 Sep 2025 20:02:43 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jennifer Brown, MD, PhD, director of the CLL Center at Dana-Farber Cancer Institute in Boston, Massachusetts, and winner of the 2025 Michael J. Keating Outstanding Achievement Award.


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]]> An Interview With Dr. Jennifer Brown, Director of the CLL Center at Dana-Farber Cancer Institute Rare Disease Advisor 00:13:28 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jennifer Brown, MD, PhD, director of the CLL Center at Dana-Farber Cancer Institute in Boston, Massachusetts, and winner of the 2025 Michael J. Keating Outstanding Achievement Award. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jennifer Brown, MD, PhD, director of the CLL Center at Dana-Farber Cancer Institute in Boston, Massachusetts, and winner of the 2025 Michael J. Keating Outstanding Achievement Award. false full 189 847b15fb-b7d2-451e-9f23-c99e28552901 An Interview With Michio Hirano, MD, a Global Expert on Thymidine Kinase 2 Deficiency Larry Luxner, senior correspondent for Rare Disease Advisor, interviews neurologist Michio Hirano, MD, of Columbia University in New York about an investigative therapy that shows promise in treating thymidine kinase 2 deficiency (TK2d), an ultrarare disease.


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]]> Wed, 3 Sep 2025 14:06:06 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews neurologist Michio Hirano, MD, of Columbia University in New York about an investigative therapy that shows promise in treating thymidine kinase 2 deficiency (TK2d), an ultrarare disease.


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]]> An Interview With Michio Hirano, MD, a Global Expert on Thymidine Kinase 2 Deficiency Rare Disease Advisor 00:08:48 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews neurologist Michio Hirano, MD, of Columbia University in New York about an investigative therapy that shows promise in treating thymidine kinase 2 deficiency (TK2d), an ultrarare disease. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews neurologist Michio Hirano, MD, of Columbia University in New York about an investigative therapy that shows promise in treating thymidine kinase 2 deficiency (TK2d), an ultrarare disease. false full 188 4f570d68-f2c9-4562-a1a2-19a54e882c81 An Interview With Dr. Pradeep P.A. Mammen on Females With Duchenne Muscular Dystrophy Larry Luxner, senior correspondent for Rare Disease Advisor, interviews cardiologist Pradeep P.A. Mammen, MD, of the University of Kansas School of Medicine, on the growing awareness of girls affected by Duchenne muscular dystrophy.


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]]> Wed, 27 Aug 2025 14:05:35 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews cardiologist Pradeep P.A. Mammen, MD, of the University of Kansas School of Medicine, on the growing awareness of girls affected by Duchenne muscular dystrophy.


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]]> An Interview With Dr. Pradeep P.A. Mammen on Females With Duchenne Muscular Dystrophy Rare Disease Advisor 00:12:48 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews cardiologist Pradeep P.A. Mammen, MD, of the University of Kansas School of Medicine, on the growing awareness of girls affected by Duchenne muscular dystrophy. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews cardiologist Pradeep P.A. Mammen, MD, of the University of Kansas School of Medicine, on the growing awareness of girls affected by Duchenne muscular dystrophy. false full 187 5c77cbbd-7bd0-4ac2-917b-f13fa1d2f902 An Interview With Kfir Oved, CEO of Canopy Biotech, Which is Pursuing Novel Treatments in MG Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kfir Oved about the latest Israeli research on myasthenia gravis.


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]]> Mon, 18 Aug 2025 18:00:33 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kfir Oved about the latest Israeli research on myasthenia gravis.


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]]> An Interview With Kfir Oved, CEO of Canopy Biotech, Which is Pursuing Novel Treatments in MG Rare Disease Advisor 00:15:35 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kfir Oved about the latest Israeli research on myasthenia gravis. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kfir Oved about the latest Israeli research on myasthenia gravis. false full 186 339d1deb-8edf-4c4c-aeea-a2600582e367 An Interview With Ileen Colin del Río, President of Duchenne Mexico Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ileen Colin del Río, the mother of a boy with Duchenne muscular dystrophy and president of the Cancún-based nonprofit group Duchenne Mexico.


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]]> Wed, 13 Aug 2025 14:21:37 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ileen Colin del Río, the mother of a boy with Duchenne muscular dystrophy and president of the Cancún-based nonprofit group Duchenne Mexico.


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]]> An Interview With Ileen Colin del Río, President of Duchenne Mexico Rare Disease Advisor 00:16:09 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ileen Colin del Río, the mother of a boy with Duchenne muscular dystrophy and president of the Cancún-based nonprofit group Duchenne Mexico. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ileen Colin del Río, the mother of a boy with Duchenne muscular dystrophy and president of the Cancún-based nonprofit group Duchenne Mexico. false full 185 ddca894f-df45-4f75-b214-1266223babd0 An Interview With Aspiring DJ Yuva Gambhir Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Yuva Gambhir, 22, who doesn't let Duchenne muscular dystrophy get in the way of his aspiring career as a DJ.


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]]> Tue, 5 Aug 2025 17:46:44 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Yuva Gambhir, 22, who doesn't let Duchenne muscular dystrophy get in the way of his aspiring career as a DJ.


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]]> An Interview With Aspiring DJ Yuva Gambhir Rare Disease Advisor 00:13:40 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Yuva Gambhir, 22, who doesn't let Duchenne muscular dystrophy get in the way of his aspiring career as a DJ. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Yuva Gambhir, 22, who doesn't let Duchenne muscular dystrophy get in the way of his aspiring career as a DJ. false full 184 22f3284f-f1dc-44cc-a5b4-2a9e32d22df8 An Interview With Dr. Richard Nowak, Director of the Yale Myasthenia Gravis Clinic Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Richard Nowak, MD, director of the Myasthenia Gravis Clinic at Yale School of Medicine in New Haven, Connecticut.


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]]> Mon, 28 Jul 2025 18:58:47 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Richard Nowak, MD, director of the Myasthenia Gravis Clinic at Yale School of Medicine in New Haven, Connecticut.


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]]> An Interview With Dr. Richard Nowak, Director of the Yale Myasthenia Gravis Clinic Rare Disease Advisor 00:13:38 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Richard Nowak, MD, director of the Myasthenia Gravis Clinic at Yale School of Medicine in New Haven, Connecticut. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Richard Nowak, MD, director of the Myasthenia Gravis Clinic at Yale School of Medicine in New Haven, Connecticut. false full 183 8eebc179-b847-4b10-abb7-ce32a31ca3ef An Interview With Robert Steen of Norway on the Award-Winning Movie 'The Remarkable Life of Ibelin' Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Robert Steen of Oslo, Norway. Steen and his wife, Trude, are the parents of Mats Steen, who died of Duchenne muscular dystrophy (DMD) in 2014. An award-winning documentary, The Remarkable Life of Ibelin, is based on their son's story.


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]]> Wed, 23 Jul 2025 15:00:05 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Robert Steen of Oslo, Norway. Steen and his wife, Trude, are the parents of Mats Steen, who died of Duchenne muscular dystrophy (DMD) in 2014. An award-winning documentary, The Remarkable Life of Ibelin, is based on their son's story.


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]]> An Interview With Robert Steen of Norway on the Award-Winning Movie 'The Remarkable Life of Ibelin' Rare Disease Advisor 00:12:28 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Robert Steen of Oslo, Norway. Steen and his wife, Trude, are the parents of Mats Steen, who died of Duchenne muscular dystrophy (DMD) in 2014. An award-winning documentary, The Remarkable Life of Ibelin, is based on their son's story. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Robert Steen of Oslo, Norway. Steen and his wife, Trude, are the parents of Mats Steen, who died of Duchenne muscular dystrophy (DMD) in 2014. An award-winning documentary, The Remarkable Life of Ibelin, is based on their son's story. false full 182 595d39d6-e229-4e43-984d-e3273fb2e9e1 An Interview With Dr. Carolina Barnett-Tapia, Associate Professor of Neurology at the University of Toronto, on MG Treatment Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Carolina Barnett-Tapia, MD PhD, an associate professor of neurology at the University of Toronto, about how myasthenia gravis is treated throughout the Western Hemisphere.


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]]> Mon, 14 Jul 2025 20:05:17 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Carolina Barnett-Tapia, MD PhD, an associate professor of neurology at the University of Toronto, about how myasthenia gravis is treated throughout the Western Hemisphere.


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]]> An Interview With Dr. Carolina Barnett-Tapia, Associate Professor of Neurology at the University of Toronto, on MG Treatment Rare Disease Advisor 00:13:19 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Carolina Barnett-Tapia, MD PhD, an associate professor of neurology at the University of Toronto, about how myasthenia gravis is treated throughout the Western Hemisphere. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Carolina Barnett-Tapia, MD PhD, an associate professor of neurology at the University of Toronto, about how myasthenia gravis is treated throughout the Western Hemisphere. false full 181 1117b02b-5fa9-4ca5-9774-2cf59c47faf1 An Interview With Dr. Angela Vincent, Winner of the Myasthenia Gravis Foundation of America's First Lifetime Achievement Award Larry Luxner, senior correspondent for Rare Disease Advisor, interviews British scientist Angela Vincent, winner of the first-ever Lifetime Achievement Award from the Myasthenia Gravis Foundation of America.


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]]> Tue, 8 Jul 2025 14:55:46 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews British scientist Angela Vincent, winner of the first-ever Lifetime Achievement Award from the Myasthenia Gravis Foundation of America.


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]]> An Interview With Dr. Angela Vincent, Winner of the Myasthenia Gravis Foundation of America's First Lifetime Achievement Award Rare Disease Advisor 00:13:24 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews British scientist Angela Vincent, winner of the first-ever Lifetime Achievement Award from the Myasthenia Gravis Foundation of America. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews British scientist Angela Vincent, winner of the first-ever Lifetime Achievement Award from the Myasthenia Gravis Foundation of America. false full 180 084cd825-d497-4bce-b53b-8bf92eea383d An Interview With Dr. Daniel Grant, VP and Global Program Head at Novartis Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Daniel Grant, MD, vice president and global program head of neuroscience and gene therapy at Swiss pharma giant Novartis, on emerging therapies for SMA.


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]]> Wed, 2 Jul 2025 19:31:20 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Daniel Grant, MD, vice president and global program head of neuroscience and gene therapy at Swiss pharma giant Novartis, on emerging therapies for SMA.


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]]> An Interview With Dr. Daniel Grant, VP and Global Program Head at Novartis Rare Disease Advisor 00:13:13 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Daniel Grant, MD, vice president and global program head of neuroscience and gene therapy at Swiss pharma giant Novartis, on emerging therapies for SMA. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Daniel Grant, MD, vice president and global program head of neuroscience and gene therapy at Swiss pharma giant Novartis, on emerging therapies for SMA. false full 179 455aad63-6d22-4b1c-9d1d-dfd4835c18cf An Interview With Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas, on therapeutic options available to patients with Duchenne muscular dystrophy (DMD).


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]]> Thu, 26 Jun 2025 19:41:19 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas, on therapeutic options available to patients with Duchenne muscular dystrophy (DMD).


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]]> An Interview With Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas Rare Disease Advisor 00:14:47 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas, on therapeutic options available to patients with Duchenne muscular dystrophy (DMD). Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas, on therapeutic options available to patients with Duchenne muscular dystrophy (DMD). false full 178 e3b217ad-b758-4e73-95ef-a6c265d83014 An Interview With Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas, on therapeutic options available to patients with Duchenne muscular dystrophy (DMD).


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]]> Thu, 26 Jun 2025 19:41:13 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas, on therapeutic options available to patients with Duchenne muscular dystrophy (DMD).


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]]> An Interview With Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas Rare Disease Advisor 00:14:47 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas, on therapeutic options available to patients with Duchenne muscular dystrophy (DMD). Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas, on therapeutic options available to patients with Duchenne muscular dystrophy (DMD). false full 178 48621f2b-1e6f-42b6-86c3-55ade1276e36 An Interview With Dr. Sithara Ramdas on Neonatal and Juvenile Myasthenia Gravis Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric neurologist Sithara Ramdas, MD, of Oxford Children's Hospital in England, on neonatal and juvenile myasthenia gravis.


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]]> Fri, 20 Jun 2025 14:26:51 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric neurologist Sithara Ramdas, MD, of Oxford Children's Hospital in England, on neonatal and juvenile myasthenia gravis.


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]]> An Interview With Dr. Sithara Ramdas on Neonatal and Juvenile Myasthenia Gravis Rare Disease Advisor 00:11:54 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric neurologist Sithara Ramdas, MD, of Oxford Children's Hospital in England, on neonatal and juvenile myasthenia gravis. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric neurologist Sithara Ramdas, MD, of Oxford Children's Hospital in England, on neonatal and juvenile myasthenia gravis. false full 177 eeacd3f4-9df7-45af-87cd-04dc3eafcf0b An Interview With Lyza Weisman on Living With Spinal Muscular Atrophy Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lyza Weisman, who has spinal muscular atrophy type 2, about how she copes with progressive loss of muscle function.


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]]> Wed, 18 Jun 2025 18:11:59 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lyza Weisman, who has spinal muscular atrophy type 2, about how she copes with progressive loss of muscle function.


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]]> An Interview With Lyza Weisman on Living With Spinal Muscular Atrophy Rare Disease Advisor 00:15:14 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lyza Weisman, who has spinal muscular atrophy type 2, about how she copes with progressive loss of muscle function. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lyza Weisman, who has spinal muscular atrophy type 2, about how she copes with progressive loss of muscle function. false full 176 98a269ef-9838-4a9b-9de3-14d724db4787 An Interview With Allucent's Marcus Delatte, PhD, on Using Cannabinoids to Treat Patients With Rare Seizure Disorders Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Marcus Delatte, PhD, on how the versatile cannabis plant offers innovative treatments for children with Dravet syndrome and Lennox-Gestaut syndrome.


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]]> Fri, 13 Jun 2025 15:00:53 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Marcus Delatte, PhD, on how the versatile cannabis plant offers innovative treatments for children with Dravet syndrome and Lennox-Gestaut syndrome.


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]]> An Interview With Allucent's Marcus Delatte, PhD, on Using Cannabinoids to Treat Patients With Rare Seizure Disorders Rare Disease Advisor 00:10:30 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Marcus Delatte, PhD, on how the versatile cannabis plant offers innovative treatments for children with Dravet syndrome and Lennox-Gestaut syndrome. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Marcus Delatte, PhD, on how the versatile cannabis plant offers innovative treatments for children with Dravet syndrome and Lennox-Gestaut syndrome. false full 175 5c190332-37ba-4b00-a6fa-2647aeb914a2 An Interview With Lucy Culp, VP of State Government Affairs at the Leukemia & Lymphoma Society Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lucy Culp, vice-president of state government affairs at the Leukemia & Lymphoma Society, on top issues of importance to patients with rare blood cancers.


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]]> Mon, 9 Jun 2025 20:03:57 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lucy Culp, vice-president of state government affairs at the Leukemia & Lymphoma Society, on top issues of importance to patients with rare blood cancers.


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]]> An Interview With Lucy Culp, VP of State Government Affairs at the Leukemia & Lymphoma Society Rare Disease Advisor 00:11:13 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lucy Culp, vice-president of state government affairs at the Leukemia & Lymphoma Society, on top issues of importance to patients with rare blood cancers. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lucy Culp, vice-president of state government affairs at the Leukemia & Lymphoma Society, on top issues of importance to patients with rare blood cancers. false full 174 a5873217-c6ca-495b-828f-99adb4744870 An Interview With Amyloidosis Patient Dan Lier, a Partner With the Nonprofit Group 'Somebody To Talk To' Larry Luxner, senior correspondent for Rare Disease Advisor, interviews amyloidosis patient and former basketball player Dan Lier, a partner with the nonprofit group Somebody To Talk To, about his new "Rare Disease Playbook."


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]]> Mon, 26 May 2025 11:00:00 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews amyloidosis patient and former basketball player Dan Lier, a partner with the nonprofit group Somebody To Talk To, about his new "Rare Disease Playbook."


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]]> An Interview With Amyloidosis Patient Dan Lier, a Partner With the Nonprofit Group 'Somebody To Talk To' Rare Disease Advisor 00:10:46 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews amyloidosis patient and former basketball player Dan Lier, a partner with the nonprofit group Somebody To Talk To, about his new "Rare Disease Playbook." Larry Luxner, senior correspondent for Rare Disease Advisor, interviews amyloidosis patient and former basketball player Dan Lier, a partner with the nonprofit group Somebody To Talk To, about his new "Rare Disease Playbook." false full 173 b093146b-b367-4a4e-929c-bac9302d0702 An Interview With Huntington Disease Patient and Advocate Lauren Holder of Help 4 HD Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lauren Holder, an activist and patient with Huntington disease, as well as producer and host of the podcast series Help 4 HD Live.


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]]> Mon, 19 May 2025 18:13:00 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lauren Holder, an activist and patient with Huntington disease, as well as producer and host of the podcast series Help 4 HD Live.


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]]> An Interview With Huntington Disease Patient and Advocate Lauren Holder of Help 4 HD Rare Disease Advisor 00:12:25 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lauren Holder, an activist and patient with Huntington disease, as well as producer and host of the podcast series Help 4 HD Live. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lauren Holder, an activist and patient with Huntington disease, as well as producer and host of the podcast series Help 4 HD Live. false full 172 b1be3c25-937d-4464-b853-4984b2e5683b An Interview WIth Antonella Favit-Van Pelt, MD, PhD, on Neuromodulation to Treat Multiple Sclerosis Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Antonella Favit-Van Pelt, MD, PhD, chief medical officer at Helius Medical, on the potential of neuromodulation to treat people with multiple sclerosis.


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]]> Thu, 15 May 2025 19:57:21 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Antonella Favit-Van Pelt, MD, PhD, chief medical officer at Helius Medical, on the potential of neuromodulation to treat people with multiple sclerosis.


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]]> An Interview WIth Antonella Favit-Van Pelt, MD, PhD, on Neuromodulation to Treat Multiple Sclerosis Rare Disease Advisor 00:15:44 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Antonella Favit-Van Pelt, MD, PhD, chief medical officer at Helius Medical, on the potential of neuromodulation to treat people with multiple sclerosis. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Antonella Favit-Van Pelt, MD, PhD, chief medical officer at Helius Medical, on the potential of neuromodulation to treat people with multiple sclerosis. false full 171 738c43d4-98b7-4110-ba7f-fbcbd947ba5e An Interview With Joyce Kullman, Executive Director of the Vasculitis Foundation Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Joyce Kullman, executive director of the Vasculitis Foundation, duirng Vasculitis Awareness Month.


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]]> Thu, 8 May 2025 17:19:58 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Joyce Kullman, executive director of the Vasculitis Foundation, duirng Vasculitis Awareness Month.


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]]> An Interview With Joyce Kullman, Executive Director of the Vasculitis Foundation Rare Disease Advisor 00:12:09 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Joyce Kullman, executive director of the Vasculitis Foundation, duirng Vasculitis Awareness Month. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Joyce Kullman, executive director of the Vasculitis Foundation, duirng Vasculitis Awareness Month. false full 170 80320d3a-ed93-4bff-b620-79384dfde791 An Interview With Chris Lewis, Son of Famous Comedian Jerry Lewis Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Chris Lewis, whose father, Jerry Lewis, was not only among the most famous comedians of the 20th century but also a tireless advocate for people with muscular dystrophy.


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]]> Thu, 8 May 2025 16:37:25 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Chris Lewis, whose father, Jerry Lewis, was not only among the most famous comedians of the 20th century but also a tireless advocate for people with muscular dystrophy.


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]]> An Interview With Chris Lewis, Son of Famous Comedian Jerry Lewis Rare Disease Advisor 00:13:35 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Chris Lewis, whose father, Jerry Lewis, was not only among the most famous comedians of the 20th century but also a tireless advocate for people with muscular dystrophy. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Chris Lewis, whose father, Jerry Lewis, was not only among the most famous comedians of the 20th century but also a tireless advocate for people with muscular dystrophy. false full 169 7ab644d5-b5f4-4637-a800-89c4a211b8d8 An Interview WIth Lisa Butler, CEO of the GBS-CIDP Foundation Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lisa Butler, CEO of the GBS-CIDP Foundation, on what her organization is doing for patients with chronic inflammatory demyelinating polyneuropathy (CIDP).


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]]> Wed, 30 Apr 2025 17:20:11 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lisa Butler, CEO of the GBS-CIDP Foundation, on what her organization is doing for patients with chronic inflammatory demyelinating polyneuropathy (CIDP).


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]]> An Interview WIth Lisa Butler, CEO of the GBS-CIDP Foundation Rare Disease Advisor 00:12:34 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lisa Butler, CEO of the GBS-CIDP Foundation, on what her organization is doing for patients with chronic inflammatory demyelinating polyneuropathy (CIDP). Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lisa Butler, CEO of the GBS-CIDP Foundation, on what her organization is doing for patients with chronic inflammatory demyelinating polyneuropathy (CIDP). false full 168 297a61d2-0e8d-44de-9de5-cbc31b3257df An Interview With MDA Patient Advocate Donavon Decker, Winner of the 2025 MDA Legacy Award for Community Impact in Research Larry Luxner, senior correspondent for Rare Disease Advisor, talks to Donavon Decker, who has limb-girdle muscular dystrophy. Decker is the winner of the 2025 MDA Legacy Award for Community Impact in Research.


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]]> Mon, 28 Apr 2025 17:27:03 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, talks to Donavon Decker, who has limb-girdle muscular dystrophy. Decker is the winner of the 2025 MDA Legacy Award for Community Impact in Research.


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]]> An Interview With MDA Patient Advocate Donavon Decker, Winner of the 2025 MDA Legacy Award for Community Impact in Research Rare Disease Advisor 00:13:19 Larry Luxner, senior correspondent for Rare Disease Advisor, talks to Donavon Decker, who has limb-girdle muscular dystrophy. Decker is the winner of the 2025 MDA Legacy Award for Community Impact in Research. Larry Luxner, senior correspondent for Rare Disease Advisor, talks to Donavon Decker, who has limb-girdle muscular dystrophy. Decker is the winner of the 2025 MDA Legacy Award for Community Impact in Research. false full 167 b255dadb-f4a7-4203-8412-474e033a8b2c An Interview With MDA 2025 National Ambassador Lily Sander Larry Luxner, senior correspondent for Rare Disease Advisor, interviews 17-year-old Lily Sander with Charcot-Marie-Tooth disease. The Muscular Dystrophy Association has named Sander its 2025 MDA Patient Ambassador.


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]]> Tue, 15 Apr 2025 15:28:38 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews 17-year-old Lily Sander with Charcot-Marie-Tooth disease. The Muscular Dystrophy Association has named Sander its 2025 MDA Patient Ambassador.


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]]> An Interview With MDA 2025 National Ambassador Lily Sander Rare Disease Advisor 00:14:51 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews 17-year-old Lily Sander with Charcot-Marie-Tooth disease. The Muscular Dystrophy Association has named Sander its 2025 MDA Patient Ambassador. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews 17-year-old Lily Sander with Charcot-Marie-Tooth disease. The Muscular Dystrophy Association has named Sander its 2025 MDA Patient Ambassador. false full 166 158f4743-f1e6-496a-809d-3ae6ae2fa66f An Interview With Duchenne Expert Katherine Mathews, MD, of the University of Iowa Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Katherine Mathews, MD, winner of the Muscular Dystrophy Association's 2025 Legacy Award for Achievement in Clinical Research for her contributions to understanding and treating genetic disorders affecting the neuromuscular system.


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]]> Fri, 11 Apr 2025 17:23:54 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Katherine Mathews, MD, winner of the Muscular Dystrophy Association's 2025 Legacy Award for Achievement in Clinical Research for her contributions to understanding and treating genetic disorders affecting the neuromuscular system.


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]]> An Interview With Duchenne Expert Katherine Mathews, MD, of the University of Iowa Rare Disease Advisor 00:11:25 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Katherine Mathews, MD, winner of the Muscular Dystrophy Association's 2025 Legacy Award for Achievement in Clinical Research for her contributions to understanding and treating genetic disorders affecting the neuromuscular system. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Katherine Mathews, MD, winner of the Muscular Dystrophy Association's 2025 Legacy Award for Achievement in Clinical Research for her contributions to understanding and treating genetic disorders affecting the neuromuscular system. false full 165 7188bf19-99b4-41c9-bc4f-33e27767b918 An Interview With Generalized Pustular Psoriasis Expert Arash Mostaghimi, MD Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Arash Mostaghimi, MD, an associate professor of dermatology and a practicing physician at Boston's Brigham and Women's Hospital. Dr. Mostaghimi is a recognized expert on generalized pustular psoriasis (GPP).


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]]> Mon, 7 Apr 2025 13:19:28 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Arash Mostaghimi, MD, an associate professor of dermatology and a practicing physician at Boston's Brigham and Women's Hospital. Dr. Mostaghimi is a recognized expert on generalized pustular psoriasis (GPP).


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]]> An Interview With Generalized Pustular Psoriasis Expert Arash Mostaghimi, MD Rare Disease Advisor 00:09:09 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Arash Mostaghimi, MD, an associate professor of dermatology and a practicing physician at Boston's Brigham and Women's Hospital. Dr. Mostaghimi is a recognized expert on generalized pustular psoriasis (GPP). Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Arash Mostaghimi, MD, an associate professor of dermatology and a practicing physician at Boston's Brigham and Women's Hospital. Dr. Mostaghimi is a recognized expert on generalized pustular psoriasis (GPP). false full 164 3e1fdc0f-4e00-452f-abaa-36509ba80073 An Interview With Clinical Hematologist and Professor Dr. Luke Chen Rare Disease Advisor correspondent Tori Rodriguez interviews clinical hematologist and professor Luke Chen, MD, about IgG4-related disease and how it mimics various malignancies.


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]]> Tue, 1 Apr 2025 18:01:29 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Rare Disease Advisor correspondent Tori Rodriguez interviews clinical hematologist and professor Luke Chen, MD, about IgG4-related disease and how it mimics various malignancies.


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]]> An Interview With Clinical Hematologist and Professor Dr. Luke Chen Rare Disease Advisor 00:16:04 Rare Disease Advisor correspondent Tori Rodriguez interviews clinical hematologist and professor Luke Chen, MD, about IgG4-related disease and how it mimics various malignancies. Rare Disease Advisor correspondent Tori Rodriguez interviews clinical hematologist and professor Luke Chen, MD, about IgG4-related disease and how it mimics various malignancies. false full 163 d62176a3-d9ea-4025-8a05-21a367bc51d3 An Interview With John Anderson, MD, Expert on Hereditary Angioedema Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Anderson, MD, chief research officer at AllerVie Clinical Research, on the complexities of diagnosing and treating hereditary angioedema.


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]]> Mon, 17 Mar 2025 20:32:21 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Anderson, MD, chief research officer at AllerVie Clinical Research, on the complexities of diagnosing and treating hereditary angioedema.


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]]> An Interview With John Anderson, MD, Expert on Hereditary Angioedema Rare Disease Advisor 00:10:32 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Anderson, MD, chief research officer at AllerVie Clinical Research, on the complexities of diagnosing and treating hereditary angioedema. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Anderson, MD, chief research officer at AllerVie Clinical Research, on the complexities of diagnosing and treating hereditary angioedema. false full 162 8cef3a85-fbc7-450e-87b8-567ebd13d203 An Interview With Retired NFL Athlete and Amyloidosis Patient Advocate Art Still Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Art Still, former defensive end for the Kansas City Chiefs and an NFL Hall of Famer who's now a patient advocate dedicated to raising awareness about amyloidosis.


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]]> Thu, 13 Mar 2025 15:45:31 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Art Still, former defensive end for the Kansas City Chiefs and an NFL Hall of Famer who's now a patient advocate dedicated to raising awareness about amyloidosis.


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]]> An Interview With Retired NFL Athlete and Amyloidosis Patient Advocate Art Still Rare Disease Advisor 00:17:04 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Art Still, former defensive end for the Kansas City Chiefs and an NFL Hall of Famer who's now a patient advocate dedicated to raising awareness about amyloidosis. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Art Still, former defensive end for the Kansas City Chiefs and an NFL Hall of Famer who's now a patient advocate dedicated to raising awareness about amyloidosis. false full 161 f66caaff-1ea1-4848-8a1a-5bc7fd7fc7cc An Interview With Heather Landau, MD, on the Latest Therapies for Amyloidosis Larry Luxner, senior correspondent for Rare Disease Advisor, interviews oncologist-hematologist Heather Landau, MD, of Sloan Kettering Memorial Cancer Center in New York City, for National Amyloidosis Awareness Month.


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]]> Thu, 6 Mar 2025 15:36:16 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews oncologist-hematologist Heather Landau, MD, of Sloan Kettering Memorial Cancer Center in New York City, for National Amyloidosis Awareness Month.


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]]> An Interview With Heather Landau, MD, on the Latest Therapies for Amyloidosis Rare Disease Advisor 00:17:03 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews oncologist-hematologist Heather Landau, MD, of Sloan Kettering Memorial Cancer Center in New York City, for National Amyloidosis Awareness Month. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews oncologist-hematologist Heather Landau, MD, of Sloan Kettering Memorial Cancer Center in New York City, for National Amyloidosis Awareness Month. false full 160 451abd9a-1761-43d6-b97e-afd9ce9f57b9 An Interview With Hereditary Angioedema Expert Dr. Timothy Craig Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Timothy Craig, DO, a tenured professor of medicine, pediatrics and biomedical sciences at Pennsylvania State University in Hershey. Dr. Craig has been researching hereditary angioedema for 30 years.


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]]> Thu, 27 Feb 2025 21:55:22 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Timothy Craig, DO, a tenured professor of medicine, pediatrics and biomedical sciences at Pennsylvania State University in Hershey. Dr. Craig has been researching hereditary angioedema for 30 years.


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]]> An Interview With Hereditary Angioedema Expert Dr. Timothy Craig Rare Disease Advisor 00:14:19 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Timothy Craig, DO, a tenured professor of medicine, pediatrics and biomedical sciences at Pennsylvania State University in Hershey. Dr. Craig has been researching hereditary angioedema for 30 years. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Timothy Craig, DO, a tenured professor of medicine, pediatrics and biomedical sciences at Pennsylvania State University in Hershey. Dr. Craig has been researching hereditary angioedema for 30 years. false full 158 c560f3d8-5612-4ccd-af99-59cafb16b9cd An Interview With Dr. Sangeetha Venugopal on the relationship between smoking and myelodysplastic syndromes (MDS) Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sangeetha Venugopal, MD, assistant professor of clinical medicine at the University of Miami's Sylvester Comprehensive Cancer Center. Dr. Venugopal speaks on how smoking worsens outcomes for patients with a group of blood cancers known as myelodysplastic syndromes (MDS).


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]]> Thu, 20 Feb 2025 15:30:54 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sangeetha Venugopal, MD, assistant professor of clinical medicine at the University of Miami's Sylvester Comprehensive Cancer Center. Dr. Venugopal speaks on how smoking worsens outcomes for patients with a group of blood cancers known as myelodysplastic syndromes (MDS).


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]]> An Interview With Dr. Sangeetha Venugopal on the relationship between smoking and myelodysplastic syndromes (MDS) Rare Disease Advisor 00:12:08 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sangeetha Venugopal, MD, assistant professor of clinical medicine at the University of Miami's Sylvester Comprehensive Cancer Center. Dr. Venugopal speaks on how smoking worsens outcomes for patients with a group of blood cancers known as myelodysplastic syndromes (MDS). Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sangeetha Venugopal, MD, assistant professor of clinical medicine at the University of Miami's Sylvester Comprehensive Cancer Center. Dr. Venugopal speaks on how smoking worsens outcomes for patients with a group of blood cancers known as myelodysplastic syndromes (MDS). false full 158 992caf63-e15b-4044-a3e2-18b1c0d4b087 An Interview With Andrea Renzi, a Patient Advocate for Women Affected by HDFN Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Renzi, a New Hampshire mother and patient advocate whose family has been affected by hemolytic disease of the fetus and newborn (HDFN).


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]]> Wed, 12 Feb 2025 21:31:57 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Renzi, a New Hampshire mother and patient advocate whose family has been affected by hemolytic disease of the fetus and newborn (HDFN).


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]]> An Interview With Andrea Renzi, a Patient Advocate for Women Affected by HDFN Rare Disease Advisor 00:12:15 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Renzi, a New Hampshire mother and patient advocate whose family has been affected by hemolytic disease of the fetus and newborn (HDFN). Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Renzi, a New Hampshire mother and patient advocate whose family has been affected by hemolytic disease of the fetus and newborn (HDFN). false full 157 7a39cb6e-bcb6-4531-ab83-7040fce388fe An Interview With Dr. James Bussel on Fetal and Neonatal Alloimmune Thrombocytopenia (FNAIT) Larry Luxner, senior correspondent for Rare Disease Advisor, interviews James Bussel, MD, emeritus professor of pediatrics, medicine, and obstetrics and gynecology at New York's Weill Cornell Medicine. The topic of their discussion is nipocalimab as a potential treatment for fetal and neonatal alloimmune thrombocytopenia (FNAIT).


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]]> Wed, 5 Feb 2025 14:19:34 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews James Bussel, MD, emeritus professor of pediatrics, medicine, and obstetrics and gynecology at New York's Weill Cornell Medicine. The topic of their discussion is nipocalimab as a potential treatment for fetal and neonatal alloimmune thrombocytopenia (FNAIT).


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]]> An Interview With Dr. James Bussel on Fetal and Neonatal Alloimmune Thrombocytopenia (FNAIT) Rare Disease Advisor 00:13:27 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews James Bussel, MD, emeritus professor of pediatrics, medicine, and obstetrics and gynecology at New York's Weill Cornell Medicine. The topic of their discussion is nipocalimab as a potential treatment for fetal and neonatal alloimmune thrombocytopenia (FNAIT). Larry Luxner, senior correspondent for Rare Disease Advisor, interviews James Bussel, MD, emeritus professor of pediatrics, medicine, and obstetrics and gynecology at New York's Weill Cornell Medicine. The topic of their discussion is nipocalimab as a potential treatment for fetal and neonatal alloimmune thrombocytopenia (FNAIT). false full 156 329f2931-858d-49bf-bc27-137ed22085b4 An Interview With Rigoberto Garcia, Executive Director of the Hemophilia Foundation of Southern California Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rigoberto Garcia, executive director of the Hemophilia Foundation of Southern California, about the difficulty minorities—especially undocumented Hispanics—have in accessing treatment for their bleeding disorders.


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]]> Fri, 31 Jan 2025 20:58:07 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rigoberto Garcia, executive director of the Hemophilia Foundation of Southern California, about the difficulty minorities—especially undocumented Hispanics—have in accessing treatment for their bleeding disorders.


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]]> An Interview With Rigoberto Garcia, Executive Director of the Hemophilia Foundation of Southern California Rare Disease Advisor 00:15:25 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rigoberto Garcia, executive director of the Hemophilia Foundation of Southern California, about the difficulty minorities—especially undocumented Hispanics—have in accessing treatment for their bleeding disorders. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rigoberto Garcia, executive director of the Hemophilia Foundation of Southern California, about the difficulty minorities—especially undocumented Hispanics—have in accessing treatment for their bleeding disorders. false full 155 19dba4d2-b8a4-48a5-83bc-afaacbe10e5e An Interview With AATD Patient Kristin Hatcher of the Global Liver Institute Larry Luxner, senior correspondent for Rare DIsease Advisor, interviews Kristin Hatcher, director of pediatric and rare diseases at the Global Liver Institute. Hatcher has both alpha-1 antitrypsin deficiency (AATD) and Von Willebrand disease, a rare clotting disorder.


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]]> Fri, 24 Jan 2025 15:15:31 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare DIsease Advisor, interviews Kristin Hatcher, director of pediatric and rare diseases at the Global Liver Institute. Hatcher has both alpha-1 antitrypsin deficiency (AATD) and Von Willebrand disease, a rare clotting disorder.


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]]> An Interview With AATD Patient Kristin Hatcher of the Global Liver Institute Rare Disease Advisor 00:13:16 Larry Luxner, senior correspondent for Rare DIsease Advisor, interviews Kristin Hatcher, director of pediatric and rare diseases at the Global Liver Institute. Hatcher has both alpha-1 antitrypsin deficiency (AATD) and Von Willebrand disease, a rare clotting disorder. Larry Luxner, senior correspondent for Rare DIsease Advisor, interviews Kristin Hatcher, director of pediatric and rare diseases at the Global Liver Institute. Hatcher has both alpha-1 antitrypsin deficiency (AATD) and Von Willebrand disease, a rare clotting disorder. false full 154 c17372dc-a507-463f-abb4-980ad63e64ed An Interview With Terry Jo Bichell, PhD, Founder and Director of CombinedBrain Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Terry Jo Bichell, PhD, founder and director of CombinedBrain, which advocates for patients with 110 neurogenetic diseases. Dr. Bichell is part of a panel that's studying how the US Food and Drug Administration can do a better job of speeding up clinical trials and becoming more transparent about its decisions.


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]]> Fri, 17 Jan 2025 15:06:40 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Terry Jo Bichell, PhD, founder and director of CombinedBrain, which advocates for patients with 110 neurogenetic diseases. Dr. Bichell is part of a panel that's studying how the US Food and Drug Administration can do a better job of speeding up clinical trials and becoming more transparent about its decisions.


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]]> An Interview With Terry Jo Bichell, PhD, Founder and Director of CombinedBrain Rare Disease Advisor 00:15:32 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Terry Jo Bichell, PhD, founder and director of CombinedBrain, which advocates for patients with 110 neurogenetic diseases. Dr. Bichell is part of a panel that's studying how the US Food and Drug Administration can do a better job of speeding up clinical trials and becoming more transparent about its decisions. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Terry Jo Bichell, PhD, founder and director of CombinedBrain, which advocates for patients with 110 neurogenetic diseases. Dr. Bichell is part of a panel that's studying how the US Food and Drug Administration can do a better job of speeding up clinical trials and becoming more transparent about its decisions. false full 153 cda91140-f671-4b50-b8dc-ca9155a765f6 An Interview With Erin Collins, Founder of the Chasing Rainbows Foundation Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Erin Collins, founder of the Chasing Rainbows Foundation in North Carolina's Outer Banks. The charity raises awareness of HDFN and other rare pregnancy-related diseases.


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]]> Mon, 6 Jan 2025 21:37:30 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Erin Collins, founder of the Chasing Rainbows Foundation in North Carolina's Outer Banks. The charity raises awareness of HDFN and other rare pregnancy-related diseases.


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]]> An Interview With Erin Collins, Founder of the Chasing Rainbows Foundation Rare Disease Advisor 00:15:23 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Erin Collins, founder of the Chasing Rainbows Foundation in North Carolina's Outer Banks. The charity raises awareness of HDFN and other rare pregnancy-related diseases. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Erin Collins, founder of the Chasing Rainbows Foundation in North Carolina's Outer Banks. The charity raises awareness of HDFN and other rare pregnancy-related diseases. false full 152 6e952eba-eb82-4d58-a42d-1a7f3ecd3c4b An Interview With NMOSD Expert Dean Wingerchuk, MD, of the Mayo Clinic Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dean Wingerchuk, MD, speaks on the potential for treating neuromyelitis optica spectrum disorder (NMOSD) with stem-cell therapy.


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]]> Thu, 2 Jan 2025 16:13:52 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dean Wingerchuk, MD, speaks on the potential for treating neuromyelitis optica spectrum disorder (NMOSD) with stem-cell therapy.


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]]> An Interview With NMOSD Expert Dean Wingerchuk, MD, of the Mayo Clinic Rare Disease Advisor 00:10:27 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dean Wingerchuk, MD, speaks on the potential for treating neuromyelitis optica spectrum disorder (NMOSD) with stem-cell therapy. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dean Wingerchuk, MD, speaks on the potential for treating neuromyelitis optica spectrum disorder (NMOSD) with stem-cell therapy. false full 151 c059c87e-3a7f-463c-b42f-1fc988670059 An Interview With Beloved Huntington Disease Activist Jimmy Pollard Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jimmy Pollard, who for the past 38 years has advocated on behalf of people around the world affected by Huntington disease.


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]]> Fri, 27 Dec 2024 19:06:52 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jimmy Pollard, who for the past 38 years has advocated on behalf of people around the world affected by Huntington disease.


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]]> An Interview With Beloved Huntington Disease Activist Jimmy Pollard Rare Disease Advisor 00:12:17 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jimmy Pollard, who for the past 38 years has advocated on behalf of people around the world affected by Huntington disease. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jimmy Pollard, who for the past 38 years has advocated on behalf of people around the world affected by Huntington disease. false full 150 b2fffa00-06d8-4cab-ab86-517eb68bdcc4 An Interview With Clinical Psychologist Rosalind Kalb, PhD, of Can Do-MS Larry Luxner, senior correspondent for Rare Disease Advisor, interviews clinical psychologist Rosalind Kalb, lead senior programs consultant for Can-Do MS, a Colorado-based nonprofit health and wellness organization.


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]]> Wed, 18 Dec 2024 20:36:25 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews clinical psychologist Rosalind Kalb, lead senior programs consultant for Can-Do MS, a Colorado-based nonprofit health and wellness organization.


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]]> An Interview With Clinical Psychologist Rosalind Kalb, PhD, of Can Do-MS Rare Disease Advisor 00:13:55 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews clinical psychologist Rosalind Kalb, lead senior programs consultant for Can-Do MS, a Colorado-based nonprofit health and wellness organization. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews clinical psychologist Rosalind Kalb, lead senior programs consultant for Can-Do MS, a Colorado-based nonprofit health and wellness organization. false full 149 bb80518f-bfb1-46a7-80f1-43910dc06eee An Interview With Huntington Disease Patient Activist Tanita Allen Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Tanita Allen, a Black woman with Huntington disease who has made it her mission to increase awareness about the disorder and its devastating impact on patients regardless of their racial or ethnic background.


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]]> Mon, 16 Dec 2024 14:28:39 +0000 michael.nace@haymarketmedia.com (Rare Disease Advisor) https://www.rarediseaseadvisor.com/ Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Tanita Allen, a Black woman with Huntington disease who has made it her mission to increase awareness about the disorder and its devastating impact on patients regardless of their racial or ethnic background.


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]]> An Interview With Huntington Disease Patient Activist Tanita Allen Rare Disease Advisor 00:11:17 Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Tanita Allen, a Black woman with Huntington disease who has made it her mission to increase awareness about the disorder and its devastating impact on patients regardless of their racial or ethnic background. Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Tanita Allen, a Black woman with Huntington disease who has made it her mission to increase awareness about the disorder and its devastating impact on patients regardless of their racial or ethnic background. false full 148