The Ehlers-Danlos Society Road to 2026: What the Upcoming EDS and HSD Update Means

A major change is coming to how Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) are classified and diagnosed. The Ehlers-Danlos Society's Road to 2026 initiative is supporting an international expert process to update the 2017 framework.

What is expected in December 2026?

The Society says an updated international classification framework for all EDS types and HSD is expected to be published in December 2026 in the American Journal of Medical Genetics Part C. Once the new framework is formally published, it is expected to supersede the prior classification criteria.

Why the criteria are being revisited

Since 2017, researchers and clinicians have raised questions about how well the current hEDS and HSD criteria capture the range of patient presentations, how joint hypermobility should be assessed, and how associated features should be weighted. The new work combines research evidence, systematic review, expert consensus, clinical testing, and community input.

What the hEDS/HSD Criteria Review Study is testing

The study is examining combinations of signs and symptoms, additional joint assessments beyond the Beighton score, and revised diagnostic models. Early information released by The Ehlers-Danlos Society indicates that no single feature currently cleanly separates hEDS from HSD. Researchers are testing an expanded four-joint assessment alongside the Beighton score and evaluating proposed models in real-world clinical settings.

What we should NOT assume yet

The final criteria have not yet been published. Preliminary findings, conference presentations, and proposed models should not be used as if they are already the new diagnostic standard. Until the peer-reviewed update is released, clinicians should continue using the currently published framework appropriate to the patient's age and situation.

More guidance is expected in 2027

The Road to 2026 materials also describe a diagnostic pathway and hEDS/HSD assessment and treatment best-practice guidance expected in March 2027. These materials are intended to help clinicians translate the classification into practical diagnosis and ongoing care.

Why this matters to VCA

Hypermobility and EDS appear repeatedly in vascular-compression patient histories, including the VCA registry. That overlap is important to study, but VCA does not assume that EDS causes vascular compression or that vascular compression proves a connective-tissue disorder. Better definitions of hEDS and HSD should improve the quality of future registry data and research.

Official sources

The Ehlers-Danlos Society — Road to 2026: https://www.ehlers-danlos.com/road-to-2026/

Road to 2026 FAQs: https://www.ehlers-danlos.com/road-to-2026/faqs/

hEDS/HSD Criteria Review Study Update: https://www.ehlers-danlos.com/heds-hsd-criteria-review-study-update/

Important note

This page describes an ongoing scientific process. VCA will revise this page when the final peer-reviewed 2026 classification and subsequent 2027 guidance are published.