The Ehlers-Danlos Society is a brand new international organization, but it grew out of a US-based institution that has existed for over thirty years.
In 1985 Nancy Rogowski Founded the Ehlers-Danlos National Foundation (EDNF) to fill a deep void for patients living with one of the most misunderstood and underdiagnosed syndromes in history. Existing on a shoestring, EDNF grew 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.
In 1997 EDNF co-sponsored a conference in Villefranche, 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 2012 EDNF co-sponsored a conference in Ghent, Belgium to update the work completed in Villefranche in 1997. The work begun in Ghent was revisited in Glasgow, Scotland in June of 2015 where EDS experts articulated the need for a global organization to coordinate EDS research and medical education.
At the same time, EDNF, in partnership with Ehlers-Danlos Support UK (EDS-UK), was planning a 2016 international symposium on EDS in New York City. The goal of this symposium was to update the diagnostic criteria of EDS, and to develop standards of care which had never existed before.
The experts at the Glasgow meeting joined forces with this initiative, and began assisting with the planning of the symposium, which formed the initial structure that would become the Ehlers-Danlos Society.
In the fall of 2015 EDNF expanded its board of directors to include international leaders in EDS, and hired Lara Bloom, who ran EDS-UK for the five years prior to that point. A medical board was formed from the international symposium experts, and a launch date for the Ehlers-Danlos Society was set for May, 2016, to coincide with the international symposium.
On May 1, 2016 the Ehlers-Danlos National Foundation, in partnership with EDS experts from around the globe, became the Ehlers-Danlos Society, the leading international organization focused on Ehlers-Danlos Syndrome.