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At EDSers United, our mission is to generate international awareness, education, and support for Ehlers-Danlos Syndrome by providing resources, databases of information, inspiration, and counseling. In addition, we promote local community networks that encourage awareness, support, sharing of information, and self-preservation globally.
We represent and advocate on behalf of individuals afflicted with Ehlers-Danlos Syndrome (EDS), and other related connective tissue disorders world-wide working to establish a future where a cure for EDS exists. By joining our voices, we create a powerful force for recognition, encouraging awareness.
We strive to educate the world about Ehlers-Danlos Syndrome patient's need for treatment options and an eventual cure.
We have spent a lot of time this past year assisting local awareness efforts throughout the United States in addition to developing a Research Library for health care professionals to reference for treatment purposes.
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Our son was diagnosed in July with EDS/ hypermobility type 3. This group has been very helpful in getting the information we needed to understand this disease. They work hard in getting this information out there. Trying to raise money for research, with is much needed!!! They are an amazing ...
I am an EDSer living in Costa Rica, a country where caregivers are not properly trained in this condition. What I mean is that MDs have the general knowledge of the types and symptoms, but no more, and physical therapists or nurses don´t and so patients are under served. EDSers United gives people ...
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My daughter was born with EDS. She was diagnosed as a child but there wasn't much support back then for this condition. For a while, before EDSers United, I lost hope for any patient support as the organizations that claim to be for EDS really didn't do much for our community. This year, EDSers ...
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