216: An Interview With Allison Moore, Founder and CEO of the Hereditary Neuropathy Foundation

2026-03-23

Rare Care Podcast

0:00

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.

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222: An Interview With SMA Expert and Neurologist Dr. Kathryn Swoboda
2026-04-27
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.
221: An Interview With Dutch Neurologist Ewout Groen of SMA Europe
2026-04-20
8:51
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dutch neurologist Ewout Groen, PhD, a member of the Scientific Advisory Board of SMA Europe.
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220: An Interview With Dr. Jaime Moore on Obesity Medications and Neuromuscular Disease
2026-04-13
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.
219: An Interview With Dr. Natalie Truba on the Psychological Aspects of Gene Therapy
2026-04-07
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.
218: An Interview With Donna Shipp on Her IgG4-RD Patient Journey
2026-03-31
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.
217: An Interview With Abby Bronson of Edgewise Therapeutics About Becker Muscular Dystrophy Awareness
2026-03-30
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.
216: An Interview With Allison Moore, Founder and CEO of the Hereditary Neuropathy Foundation
2026-03-23
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.
215: An Interview With John Crowley, President and CEO of the Biotechnology Innovation Organization
2026-03-17
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.
214: An Interview With Dr. Hyun Kim, Director of the University of Minnesota's Interstitial Lung Disease Program
2026-03-02
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.
213: An Interview With Andrea Wilson-Woods, Founder of Blue Faery, a Nonprofit That Advocates for Patients With Hepatocellular Carcinoma
2026-02-24
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.

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216: An Interview With Allison Moore, Founder and CEO of the Hereditary Neuropathy Foundation

Rare Care Podcast

Fler avsnitt från "Rare Care Podcast"

222: An Interview With SMA Expert and Neurologist Dr. Kathryn Swoboda

221: An Interview With Dutch Neurologist Ewout Groen of SMA Europe

220: An Interview With Dr. Jaime Moore on Obesity Medications and Neuromuscular Disease

219: An Interview With Dr. Natalie Truba on the Psychological Aspects of Gene Therapy

218: An Interview With Donna Shipp on Her IgG4-RD Patient Journey

217: An Interview With Abby Bronson of Edgewise Therapeutics About Becker Muscular Dystrophy Awareness

216: An Interview With Allison Moore, Founder and CEO of the Hereditary Neuropathy Foundation

215: An Interview With John Crowley, President and CEO of the Biotechnology Innovation Organization

214: An Interview With Dr. Hyun Kim, Director of the University of Minnesota's Interstitial Lung Disease Program

213: An Interview With Andrea Wilson-Woods, Founder of Blue Faery, a Nonprofit That Advocates for Patients With Hepatocellular Carcinoma