When you have a rare disease, how do find a doctor with experience in your problem.
Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, the guidelines below include several ways to identify healthcare professionals who have experience with a particular condition. Potential resources include patient advocacy groups, researchers who have conducted or are conducting clinical trials, and authors of articles published in the medical literature.
The NIH’s Genetic and Rare Diseases Information Center has some help. Watch the video and then click on the link below for strategies.