New initiative will help identify strategies for the 2026 diagnostic update to translate into practice
The Ehlers-Danlos Society today announced a collaboration* with the Program in Global Primary Health Care based at Harvard Medical School Office for Research Initiatives and Global Programs, and the Brigham and Women’s Hospital Division of Global Health Equity to develop improved models of care for people with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Many people living with EDS and HSD continue to face delayed diagnosis, fragmented care, and limited provider awareness. Because most people first present to primary care providers, identifying how frontline clinicians and community-based facilities can play an essential role in improving recognition and care is vital.
Co-Designing Practical Models of Care
This collaboration will focus on developing evidence-informed, primary care–anchored models of care and a policy roadmap to help lay the foundation to integrate EDS and HSD care into existing healthcare systems.
The work will initially focus on developing a set of operational principles applicable to the United States, United Kingdom, and Canada, with the goal of developing approaches that can be adapted across diverse healthcare systems globally.
The models of care will identify the changes required in order to support earlier recognition in primary care, coordinated referrals to specialists, and more consistent management of EDS and HSD.
Insights from this work will also help inform updates to clinical guidance, including NICE guidelines, helping ensure care pathways better reflect the needs of people living with EDS and HSD.
Preparing for the Road to 2026
This collaboration forms part of The Ehlers-Danlos Society’s broader Road to 2026 initiative with the International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders, a global effort bringing together researchers, clinicians, and community voices to advance understanding, diagnosis, and care for EDS and HSD worldwide.
“This collaboration represents an important step toward ensuring that advances in diagnosis translate into meaningful improvements in care,” said Professor Lara Bloom, President and CEO of The Ehlers-Danlos Society. “Alongside the upcoming diagnostic update, we must also ensure healthcare systems—especially primary care providers working within them—are equipped to recognize and support people living with these complex conditions.”
Further updates related to The Road to 2026 and its collaborations will be shared in the coming months. More information can be found here.
About The Ehlers-Danlos Society
The Ehlers-Danlos Society is the leading global organization dedicated to advancing research, education, and care for people living with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
*This collaboration is a sponsored research agreement funded by The Ehlers-Danlos Society and administered through Brigham and Women’s Hospital.
