David Fajgenbaum of the Perelman School of Medicine spoke about his experience pursuing a treatment for his own rare disease. “The problem isn't that every doctor doesn't know everything about every disease,” he said. “The problem is that for some diseases, no doctors know anything about those diseases”
https://www.npr.org/2020/05/13/855229776/doctor-with-rare-disease-and-no-answers-decides-to-find-his-own-cure Fresh Air (NPR)