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Rare Care Podcast
Rare Care Podcast episodes
- 206: An 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.
13 min - 205: An 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.
14 min - 204: An 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.
15 min - 203: An Interview With Dr. Matthew Might on How AI Could Transform Genome-Guided Medicine
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.
11 min - 202: An Interview With Dr. Sarah Chang on the Patient and Caregiver Burden of TK2d
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.
11 min - 201: 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.
17 min - 200: 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.
13 min - 199: 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.
17 min - 198: 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.
16 min - 197: An Interview With Gabriela Romanow, Founder of Rare Vision, a Nonprofit 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 charity showcases works by artists with rare neuroimmune diseases such as NMOSD, MOGAD and transverse myelitis.
9 min
About Rare Care Podcast
From the publisher's feed
Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.