“I knew I wasn't going to survive unless I found a drug that could save my life,” says Dr. David Fajgenbaum, who has almost died five times from the rare disorder idiopathic multicentric Castleman disease, which he developed while in medical school. Now a physician and assistant professor at the University of Pennsylvania, Fajgenbaum has led research efforts into a cure for Castleman, discovering a drug that has kept him disease-free for eight years and is helping other patients. As he continues pursuing new therapies for Castleman, Fajgenbaum is also spearheading an effort to create a system for identifying alternate uses for existing drugs, something which could benefit millions in the rare disease community and beyond. “One of my favorite examples is tocilizumab, which was made for Castleman in the 1990’s and is now the first drug you'll receive if you're admitted to the ICU with COVID,” he tells host Shiv Gaglani.

The non-profit effort is being announced this month at a Clinton Global Initiative meeting. Don’t miss this deeply inspiring conversation with many lessons on the importance of collaboration, laughter and hope, and the perspective gained from feeling like you are living on borrowed time.  

Mentioned in this episode: www.chasingmycure.com

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