Dr. David Fajgenbaum joins Gunnar on the podcast to talk about his New York Times Bestselling book, “Chasing My Cure: A Doctor’s Race to Turn Hope Into Action” and his journey from division 1 college football quarterback and medical student to a rare disease patient up against the clock to find a treatment for his suddenly diagnosed Castleman Disease. Gunnar and Dr. Fajgenbaum talk about the hurdles that often stand in front of rare disease patient populations like decentralized patient organizations, a lack of a single scientific strategy and the absence of capital required for therapeutic development. Dr. Fajgenbaum has taken those challenges in stride and founded the Castleman Disease Collaborative Network hopes that he and his colleagues can centralize the needs of the patient community while working with all stakeholders from patients and physicians to family members and researchers. Gunnar and David also talk about the parallels between Castleman Disease and COVID-19, how patients who are not medical students or medical savvy can overcome the technical barrier between patients and providers, and how repurposing existing drug designed to target other conditions could be used to help people living with rare or ultra rare diseases.
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Breathe In Ep. #43 – How to Improve Cystic Fibrosis Clinics
August 2, 2018