Finding knowledgeable Doctors

Is there anyone who has been turned away from a doctor when they find out that you have EDS? I have had doctors tell me that I need to start seeing a specialist but then they are not sure who to refer me to and tell me that I need to find my own doctor who specializes with EDS. This is the most frustrating thing. not only will they no longer treat me but they can’t even help me find someone who can. Is there somewhere to search for doctors in my area who know about EDS?

Hi @ladysparrow! I know a few people with EDS, and have seen their struggles to find doctors who can care for them. You may want to start here.


There are over 120 EDS Support Group world wide who have local doctor’s lists on the map at

There are over 90 free webinars by EDS experts that you can select by: doctors name, location and specialty at:

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