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Our History

EDNF was founded in 1985 by Nancy Rogowski. Today we have thousands of members and supporters.

In June 1997, EDNF co-sponsored a conference in France where top medical experts from around the world met to clarify the types of Ehlers-Danlos syndrome, as well as the diagnostic criteria for each type. The report from this meeting was published in the American Journal of Medical Genetics. The report made the diagnosis of EDS simpler and more uniform.

In April 1999, EDNF sponsored a meeting at Banbury Center at Cold Spring Harbor Laboratory, "The Clinical and Biological Basis of the Ehlers-Danlos Syndrome." This meeting brought together researchers and clinicians from around the world in an effort to better define EDS from the molecular basis through its natural history (the presentation of the disorder over a person's lifetime).

In the summer of 2002, EDNF completed its first CD ROM based educational program for emergency room physicians. To date, over 7,000 CD-ROMs have been distributed, free of charge, to health care professionals and individuals affected by EDS. In 2005, EDNF started the Medical Resource Guide series to inform doctors about EDS generally and in specific medical areas.

EDNF has grown from one woman's efforts to find others with whom to share emotional support, into a vital information link to and from the medical community. EDNF Board of Directors and Professional Advisory Network strive to support research and education in many ways in an effort to prevent disfigurement, crippling and premature death through early and accurate diagnosis.

Foundation activities in 2012.

Creating Knowledge
Building Community
Promoting Change