Podcast Episodes
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An Interview With Sickle Cell Disease Patient Advocate Golie-Lorenzo Green
Season 1 Episode 205
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 illnes…
Published on 5 hours ago
An Interview With Jana Monaco, a NORD Patient Ambassador From Virginia
Season 1 Episode 204
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.
Published on 1 week, 1 day ago
An Interview With Dr. Matthew Might on How AI Could Transform Genome-Guided Medicine
Season 1 Episode 203
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 i…
Published on 1 week, 6 days ago
An Interview With Dr. Sarah Chang on the Patient and Caregiver Burden of TK2d
Season 1 Episode 202
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.
Published on 3 weeks, 1 day ago
An Interview With Rheumatologist Jinoos Yazdany on the Dangers of Artificial Intelligence
Season 1 Episode 201
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 …
Published on 3 weeks, 6 days ago
An Interview With Dr. Barry Byrne, Director of the UF Powell Gene Therapy Center
Season 1 Episode 200
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.
Published on 1 month ago
An Interview With Rheumatologist Eric Matteson, Winner of the ACR's 2025 Presidential Gold Medal
Season 1 Episode 199
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.
Published on 1 month, 1 week ago
An Interview With New Mexico Patient Ambassador Karen Smoot of the Pulmonary Fibrosis Foundation
Season 1 Episode 198
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 …
Published on 1 month, 2 weeks ago
An Interview With Gabriela Romanow, Founder of Rare Vision, a Nonprofit That Helps Artists With Rare Neuroimmune Diseases
Season 1 Episode 197
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 neuroimm…
Published on 1 month, 3 weeks ago
An Interview With Lisa Shea, Director of Global Patient Advocacy and Engagement for Immunology at Johnson & Johnson
Season 1 Episode 196
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 pat…
Published on 2 months ago