Rare As One: Leveraging the Power of Patients to Accelerate Rare Disease Research

Two years ago, I heard an inspiring talk by a remarkable patient and medical professor — David Fajgenbaum. David was a third-year medical student in 2010 when he was struck with a rare disease called “idiopathic Multicentric Castleman disease” that sent his immune system into hyper-drive, causing his organs to shut down. David survived, but suffered a series of relapses over the next few years that each time brought him to the brink of death.