About The Ehlers-Danlos Society

Who We Are

Established in 1985 as the Ehlers-Danlos National Foundation by Nancy Hanna Rogowski (1957–1995) we are a nonprofit organization serving the global community to effect change and progress in the world of Ehlers-Danlos syndromes.

Read here about how EDNF became The Ehlers-Danlos Society

Our Vision

We are striving toward a time when all those with Ehlers-Danlos syndrome achieve their right for an early diagnosis, good management, respect and recognition for their condition — time when geography does not determine your quality of life and when you tell some one you have Ehlers-Danlos syndrome, you are not asked what that is.

Our Mission

Collaborative research – bringing together medical professionals from all over the world to work on ground breaking treatment into this condition.

Organizing medical symposiums every two years to update the diagnostic criteria and management and care guidelines.

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

Signposting 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 syndrome.