Ask HN: Researching an Uncommon Medical Issue

I’m curious if anyone has ever dealt with a medical issue that doctors couldn’t adequately diagnose and then proceeded to conduct independent research. It seems to me like the medical system is grossly inefficient if someone is experiencing a problem that doesn’t neatly fit into any particular specialist’s silo. Of course WebMD et al are similarly useless. I’ve also tried scouting medical research without much luck. Looking for any suggestions on a good process.