Rare Care Podcast
Rare Disease Advisor
Show overview
Rare Care Podcast has been publishing since 2024, and across the 2 years since has built a catalogue of 104 episodes. That works out to roughly 25 hours of audio in total. Releases follow a weekly cadence.
Episodes typically run ten to twenty minutes — most land between 11 min and 15 min — and the run-time is fairly consistent across the catalogue. None of the episodes are flagged explicit by the publisher. It is catalogued as a EN-language Health & Fitness show.
The show is actively publishing — the most recent episode landed 1 weeks ago, with 18 episodes already out so far this year. The busiest year was 2025, with 56 episodes published. Published by Rare Disease Advisor.
From the publisher
Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.
Latest Episodes
View all 104 episodesAn Interview With Dr. Antón Blatnik on the Molecular Mechanisms Driving Neuromuscular Disease
An Interview With SMA Expert and Neurologist Dr. Kathryn Swoboda
An Interview With Dutch Neurologist Ewout Groen of SMA Europe
An Interview With Dr. Jaime Moore on Obesity Medications and Neuromuscular Disease
An Interview With Dr. Natalie Truba on the Psychological Aspects of Gene Therapy
S1 Ep 218An 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.
S1 Ep 217An 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.
S1 Ep 216An 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.
S1 Ep 215An 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.
S1 Ep 214An 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.
S1 Ep 213An 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.
S1 Ep 212An 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.
S1 Ep 211An 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.
S1 Ep 210An 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).
S1 Ep 209An 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.
S1 Ep 208An 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.
S1 Ep 207An 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.
S1 Ep 206An 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.
S1 Ep 205An 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.
S1 Ep 204An 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.