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Rare Care Podcast
Rare Care Podcast episodes
- 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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11 min - 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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15 min - 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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14 min - 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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14 min - 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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11 min - 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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13 min - 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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13 min - 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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20 min - 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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8 min - 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.
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
12 min
About Rare Care Podcast
From the publisher's feed
Rare Disease Advisor's Rare Care podcast features conversations with experts, healthcare providers, patients, caregivers, and advocates about treating and living with rare diseases.