For the first time since 2017, the diagnostic criteria for all types of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) will be updated.
The new framework will be published on December 1, 2026, in the internationally renowned journal, the American Journal of Medical Genetics, a leading global publication for genetic and rare disease research. Once published, the new framework will replace any previously published diagnostic criteria for EDS and HSD.
In March 2027, a second publication will provide best-practice care and management pathways, helping healthcare providers understand how to best support and treat people living with EDS and HSD after diagnosis and beyond.
How This Work Was Developed
This Road to 2026 work represents years of research, international collaboration, expert opinion and consensus, and lived experience, all aimed at improving diagnosis and care worldwide.
The update is based on:
• International research evidence
• Global clinical expertise
• Systematic literature review
• Delphi consensus methodology
• Rigorous scientific peer review
This is independent science driven by experts.
What Role Does The Ehlers-Danlos Society Play?
The Ehlers-Danlos Society does not determine the scientific outcomes. We help make this work possible by:
• Funding the initiative
• Bringing independent global experts together
• Supporting the research process
• Ensuring lived experience is included at every step
We Will Be Here With You
When the update is released on December 1, The Ehlers-Danlos Society will provide:
• Explanations of updates
• Resources to improve care
• Guides for clinicians and the community
• Support navigating the changes
We will walk through this together.
Learn more about the Road to 2026 work here.
