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PODCAST

Rare Care Podcast

Rare Care Podcast

Rare Disease Advisor"s Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.

health & fitness medicine

All Episodes

14:43

219: An Interview With Dr. Natalie Truba on the...

Rare Care Podcast ·

2026/04/07

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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10:05

216: An Interview With Allison Moore, Founder and CEO...

Rare Care Podcast ·

2026/03/23

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.

en

14:23

215: An Interview With John Crowley, President and...

Rare Care Podcast ·

2026/03/17

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.

en

12:23

211: An Interview With Yen Chen, PhD, on Brain Fog...

Rare Care Podcast ·

2026/02/11

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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19:52

209: An Interview With Vesna Aleksovska, a Rare...

Rare Care Podcast ·

2026/01/28

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.

en

11:08

207: An Interview With Katharine Provencher, Director...

Rare Care Podcast ·

2026/01/12

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.

en

12:22

206: An Interview With Cecilia Dueñas, PsyD, on...

Rare Care Podcast ·

2026/01/05

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.

en

13:17

205: An Interview With Sickle Cell Disease Patient...

Rare Care Podcast ·

2025/12/30

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.

en

14:55

204: An Interview With Jana Monaco, a NORD Patient...

Rare Care Podcast ·

2025/12/22

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.

en

10:53

203: An Interview With Dr. Matthew Might on How AI...

Rare Care Podcast ·

2025/12/17

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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10:20

202: An Interview With Dr. Sarah Chang on the Patient...

Rare Care Podcast ·

2025/12/08

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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16:42

201: An Interview With Rheumatologist Jinoos Yazdany...

Rare Care Podcast ·

2025/12/03

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.

en

11:32

195: An Interview With Dr. Nicole Lamanna, Leukemia...

Rare Care Podcast ·

2025/10/22

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.

en

13:25

192: An Interview With Catherine Miller, PharmD, of...

Rare Care Podcast ·

2025/10/01

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.

en

16:13

191: An Interview With Dr. Shoshana Revel-Vilk,...

Rare Care Podcast ·

2025/09/24

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.

en

11:26

190: An Interview With Nikki McIntosh, Founder of...

Rare Care Podcast ·

2025/09/16

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.

en

13:28

189: An Interview With Dr. Jennifer Brown, Director...

Rare Care Podcast ·

2025/09/08

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.

en

8:48

188: An Interview With Michio Hirano, MD, a Global...

Rare Care Podcast ·

2025/09/03

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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12:47

187: An Interview With Dr. Pradeep P.A. Mammen on...

Rare Care Podcast ·

2025/08/27

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.

en

15:35

186: An Interview With Kfir Oved, CEO of Canopy...

Rare Care Podcast ·

2025/08/18

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kfir Oved about the latest Israeli research on myasthenia gravis.

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182 results

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