The Ehlers-Danlos Society
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Mission Statement
The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes and related disorders. We support collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS population. Our goals are world-wide awareness—and a better quality of life for all who suffer from these conditions. Research is at the center of what we do, so that one day we will have a cure. Our strength begins with hope.
About This Cause
Our inaugural year as The Ehlers-Danlos Society has been one of 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 entire range of Ehler-Danlos syndromes—to our annual Global Learning Conference, 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—wherever they are born. At The Ehlers-Danlos Society, our strength begins with hope. Join us. Regardless of your level of support, our hope begins with you.