New collaboration launched to improve diagnosis and care for EDS, HSD
Researchers aim to improve recognition and care pathways
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The Ehlers-Danlos Society is teaming up with Harvard Medical School and Brigham and Women’s Hospital in an effort to improve care for people with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD).
The ultimate goal is to develop new models that support earlier recognition in primary care, more coordinated referrals to specialists, and better management of both conditions.
“This collaboration represents an important step toward ensuring that advances in diagnosis translate into meaningful improvements in care,” Lara Bloom, president and CEO of The Ehlers-Danlos Society, said in a press release. “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.”
EDS and HSD often involve delayed diagnosis and fragmented care
EDS is a group of genetic disorders that affect connective tissue, which provide structure to joints, skin, blood vessels, and other organs. Hallmark EDS symptoms can include unusually mobile joints and soft, stretchy skin. HSD is a related diagnosis that also involves joint hypermobility and is used for people who do not meet the criteria for hypermobile EDS (the most common EDS type), but still experience symptoms related to joint hypermobility.
According to the Society, many people living with EDS and HSD still face long delays in diagnosis, along with limited awareness among healthcare providers. Care is also often spread across multiple specialists without a clear, coordinated plan. Because most patients first seek help from primary care providers, improving early recognition is seen as essential.
The new collaboration brings together The Ehlers-Danlos Society, the Program in Global Primary Health Care at Harvard Medical School’s Office for Research Initiatives and Global Programs, and the Division of Global Health Equity at Brigham and Women’s Hospital.
Together, they will work to develop evidence-informed models of care and a policy roadmap aimed at integrating EDS and HSD into existing healthcare systems.
First, the focus will be on developing a set of principles designed to be applied in the U.S., U.K., and Canada, with the goal of adapting these approaches for use in other regions worldwide.
The models will outline what needs to change to support earlier recognition in primary care, improve coordinated referral pathways to specialists, and strengthen disease management for people with EDS and HSD.
Collaboration builds on efforts to improve care and diagnosis
This effort is part of The Ehlers-Danlos Society’s broader Road to 2026 initiative, developed with the International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders.
The Road to 2026 is a global effort bringing together researchers, clinicians, and community voices to improve understanding, diagnosis, and care for EDS and HSD, including updating the 2017 International Classification of the Ehlers-Danlos syndromes, as well as developing new diagnostic and care pathways. That work is expected to be completed and published late this year.
The Society states that insights from the new collaboration may also help inform updates to clinical guidance, including guidelines such as those from the National Institute for Health and Care Excellence (NICE), to better reflect patient needs.
According to the press release, more information and additional updates on the Road to 2026 initiative are expected in the coming months.
This collaboration is being funded by The Ehlers-Danlos Society and administered by Brigham and Women’s Hospital.
