Ten Years of Global Impact. One Mission.
Established in 2016, The Ehlers-Danlos Society is the leading global organization working towards change for those with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
In 2026, we mark ten years of tireless advocacy, groundbreaking research, and a growing global community of people dedicated to changing the lives of people with EDS and HSD. What started as a dream of a more connected and empowered world for those living with these complex and often misunderstood conditions, has become a global movement that is shaping the future of care.
Our Mission
The Ehlers-Danlos Society is a global organization dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD.
Our Vision
To create a world in which each person living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs.
Our People
What We Do
The Ehlers-Danlos Society is working to address the most pressing challenges that affect people with EDS and HSD. We:
- Accelerate the time to diagnosis through advancements in research and educating healthcare professionals worldwide.
- Drive the development of treatments and therapies, through support for research and research infrastructure.
- Advance access to care by building multidisciplinary care networks, connecting people to trained providers, and championing global equity in health.
- Educate and connect through international events, training for healthcare professionals, and public awareness campaigns.
A Decade of Change: Our 10-Year Anniversary
2026 marks a decade since The Ehlers-Danlos Society launched as a truly international organization. Over the last ten years, we have:
- Launched EDS ECHO, now an award-winning global education network with more than 2,500 healthcare professionals trained across 58 countries.
- Funded more than $40 million in research, including the HEDGE study, DICE Global Registry, the biobank, and dozens of studies through our research grant program.
- Established the CORE Network of Excellence, uniting 44 centers and networks across 13 countries to improve care models and collaboration.
- Helped the development of diagnostic criteria and clinical guidance used worldwide.
- Built a network of more than 100 organizations through the Global Alliance, raising awareness and advocacy in 21 countries.
- Engaged millions through global events, awareness campaigns, and educational outreach.
We are proud recipients of the 2026 EURORDIS Members Award, in recognition of our outstanding work in rare disease advocacy, research, and education.
But our work is far from over. We are building a future where fewer people are sent home with the words “it’s all in your head,” where research leads to a breakthrough, and where every individual with EDS and HSD receives the care and respect are entitled to.
Join Us
We are the home for the international EDS and HSD community. As someone with a type of EDS or HSD, as a healthcare professional, as a researcher, or as a supporter, you are part of this community.
- More information on our educational programs
- View our upcoming events
- Explore our research priorities and opportunities
- Make a donation to support our work
Our History
The Ehlers-Danlos Society was originally established as a non-profit organization in the USA in 1985 as the Ehlers-Danlos National Foundation (EDNF) by Nancy Hanna Rogowski (1957–1995). The Ehlers-Danlos National Foundation (EDNF) filled a deep void for patients living with one of the most misunderstood and underdiagnosed syndromes in history. EDNF grew from one woman’s tireless efforts to find others with whom to share emotional support, into a vital information link to and from the medical community. Often existing on a shoestring, the impacts of EDNF’s contributions to the advancement of Ehlers-Danlos syndromes research, patient support, and public advocacy, have been felt around the world.
From the industriousness of Nancy Rogowski’s quest to learn more and to spark hope in others—to the volunteer efforts, initiative, and support of thousands to transform our understanding of the Ehlers-Danlos syndromes—The Ehlers-Danlos Society emerged in May 2016 as the very first truly international organization devoted entirely to global research and the support, advocacy, and advancement of the EDS community, caregivers, and medical professionals.
