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Rare Disease Advisor
Rare Care Podcast
Health & Fitness
Medicine
English
Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.
Website
Episodes
99
03 December 2025
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.
16 min
24 November 2025
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.
12 min
19 November 2025
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.
16 min
11 November 2025
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.
15 min
04 November 2025
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.
8 min
29 October 2025
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.
7 min
22 October 2025
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.
11 min
15 October 2025
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.
11 min
10 October 2025
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.
17 min
01 October 2025
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.
13 min