Accelerating Rare Disease Research through Collaboration

When David Fajgenbaum was in medical school he developed a rare autoimmune disease that nearly killed him. As he learned more about the state of research into the disease, he discovered researchers were all working in silos and driven by misaligned incentives. He soon abandoned his plans to become a clinical oncologist and co-founded the Castleman Disease Collaborative Network with the intent of turning the research model on its head. We spoke to Fajgenbaum, executive director of the Castleman Disease Collaborative Network and research assistant professor of medicine at the University of Pennsylvania, about his organization’s approach to research, the progress it has made in the short time it’s been around, and how it can serve as a model to other groups looking to accelerate research about rare diseases.