Who We Are
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 are a nonprofit organization, established in 1985 as the Ehlers-Danlos National Foundation by Nancy Hanna Rogowski (1957–1995). Read here about how EDNF became The Ehlers-Danlos Society.
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.
Collaborative research bringing together medical professionals from all over the world to work on ground-breaking treatment.
Organizing medical symposiums every two years to update the diagnostic criteria and guidelines for management and care.
Bringing together and uniting our community, providing annual conferences to distribute information and create opportunities to interact.
Producing reliable up-to-date medical literature though our esteemed medical and scientific board.
Guiding both patients and medical professionals to information, resources, support, and education.
Uniting support groups and charities from around the world, providing resources and information where needed.
Building chapters so that The Ehlers-Danlos Society becomes a recognized brand globally. One person fighting is a start, but many together build an army.
Giving HOPE to all those whose lives are affected by Ehlers-Danlos syndromes.