Our inaugural years as The Ehlers-Danlos Society have been the most productive in over three decades of history as an organization.
We have come a long way since our 1985 founding by Nancy Rogowski as the Ehlers-Danlos National Foundation. From our first biannual Ehlers-Danlos International Symposium—where over 200 medical professionals gathered to refine the nosology, diagnostic criteria, and treatment protocols for the entire range of Ehlers-Danlos syndromes—to our annual Global Learning Conference and establishment of our new eminent medical and scientific board, we've made great strides in the advancement of Ehlers-Danlos research, awareness, advocacy, and patient care.
With investments of thousands of donors throughout the world, we are building a new infrastructure for discovery, treatment, and community—globally.
As we strengthen, our future brightens. Together, we envision a day where early diagnosis means better management and even better patient outcomes. Across a not-so-distant horizon, we picture ever more productive, energetic lives, enveloped by the light of mutual support; steeled against pain; and steadied by the help of medical professionals fully steeped in their knowledge of Ehlers-Danlos and all of their comorbidities.
Join us. Help build the first-ever International Ehlers-Danlos Patient Registry. Help unlock the genomic secrets of Ehlers-Danlos and their multi-systemic effects in areas ranging from gastrointestinal, autonomic, mast cell, and neurological complications, to fatigue and chronic pain.
Together, we pray for the day when no child of Ehlers-Danlos comes into the world without the full support of well-informed, properly trained health professionals providing a world class standard of care.
At The Ehlers-Danlos Society, our strength begins with hope.
Join us. Regardless of your level of support, our hope begins with you.