As a long time member and volunteer, I have seen this group grow from one person's vision to THE most recognized and reliable source of information for this under-diagnosed disorder. The new EDS Clinic in Baltimore is going to meet the needs of both patients and top quality research for years to come.
Review from Guidestar
I can't imagine having to live without the support, inspiration and hard work of EDNF and its' membership. Having lived in emotional isolation for so many years without someone to share the EDS journey and the burden of its' many trials, I have now come to feel part of a growing community of EDSers on a crusade for awareness and better medical care.
After all three of my children were diagnosed with Ehlers-Danlos syndrome I turned to the foundation for information and support. Ehlers-Danlos National Foundation is THE source for all information relating to this inherited disorder of the connective tissue and offers the combination of science and support. As a member of this organization I have access at my finger tips 24/7 and receive an incredible monthly email newsletter as well as a quarterly printed publication mailed to my house. It is the best resource available for anyone/everyone looking to learn more! www.ednf.org