If you would like to do your part in finding the cure for Ehlers-Danlos Syndrome and other related conditions register today as an EDSer with the EDSers United Foundation (EUF) Patient Registry. In order to qualify, you must of been diagnosed with Ehlers-Danlos Syndrome or a related condition by a licensed health care practitioner. Undiagnosed individuals suspected of being born with EDS or a related condition are also eligible for enrollment, however we request that you notify us as soon as you receive an official diagnosis so that we may be able to properly classify you and provide more accurate statistical data for the research.
The registry holds basic contact and diagnostic information on those who agree to enroll. Any researcher with the appropriate approval can then request basic statistical information generated by the registry that might be helpful to the research they are conducting.
By enrolling in the EUF Patient Registry, participants will also have the option of choosing to be notified of any opportunities to participate in clinical trials and other research opportunities.
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View the most current clinical trials being conducted with a concentration on Ehlers-Danlos Syndrome. See if you can join a study that is still recruiting.
Support Research by registering today as an EDSer!
"Many are living below the poverty line due to a combination of not being able to work & of having to spend any money they do have on medications and other treatments that health insurance doesn't cover, if they're lucky enough to even have health insurance. Tragically, poverty, chronic pain, and chronic illness too often go hand in hand." - Tony Bernhard, J.D. in Turning Straw into Gold