Waiting for the 2026 Ehlers–Danlos Society Criteria”

By Antonia @Unremarkable Me Published January 2026

How people with hypermobility and connective-tissue mysteries sit through science’s intermission, and why the next act matters

When you’ve spent years telling doctors your joints feel like free-range spaghetti, the promise of new diagnostic criteria starts to feel like a carnival ride you have already queued for three times.

There is the flutter of maybe this time. The dread of please don’t let it drop. And the familiar, low-grade nausea of why hasn’t it dropped yet.

For people living with Hypermobile Ehlers–Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD), that ride has been running on a loop. The Ehlers–Danlos Society launched its global Road to 2026 initiative with serious ambition: revisit the 2017 diagnostic criteria and bring diagnosis and care into line with modern science and lived reality.

The goal was clear enough. Improve diagnostic accuracy. Reduce delays. Make pathways less dependent on postcode, persuasion skills, or luck.

Now, as 2026 unfolds, parts of that next act are beginning to take shape. The criteria themselves are not yet published, but the work shaping them is very real and very active.

The state of play

For now, the 2017 international diagnostic criteria remain the official reference point for hEDS and HSD. Diagnosis relies on clinical features such as generalised joint hypermobility, often measured using the Beighton score, alongside multisystem signs and the exclusion of other explanations.

Alongside this, the Road to 2026 continues as a structured global collaboration led by the International Consortium on EDS and HSD. It brings together clinical expertise, a growing research base, and the voices of people actually living in these bodies. Publications and formal recommendations are expected from late 2026 into early 2027.

If you enjoy a theatre metaphor, the curtain is still halfway up. The orchestra is tuning. No one has raised the baton yet.

The evolving science

Several major research efforts are feeding directly into the criteria review.

The hEDS/HSD Criteria Review Study is a large international project involving hundreds of participants across multiple countries. It is testing how well the current diagnostic model distinguishes hEDS and HSD from other chronic conditions, and whether revised models perform better in real clinical settings. Early findings suggest what many patients already know. These conditions exist across a shared spectrum, with no single feature cleanly dividing one label from the other. Final recommendations from this study are expected toward the end of 2026.

The HEDGE Study, a major genetic investigation into hEDS, continues to explore the biological underpinnings of a condition that remains the only EDS subtype without a confirmed genetic marker. While this does not mean diagnosis is currently genetic, publications expected across late 2025 and early 2026 may deepen scientific understanding and inform future diagnostic thinking.

Alongside this, community-led research has finally been taken seriously. The 2025 EDS and HSD Community Experience Survey has gathered lived experience at scale. Its findings are due to be published alongside the criteria update in a special issue of the American Journal of Medical Genetics.

Taken together, these strands point toward progress. Possibly slower than anyone would like, but grounded. Broader phenotypes. Real-world function. Lived experience. And maybe, one day, objective markers that support rather than replace clinical judgement.

The UK clinical maze

In the UK, until updated criteria are formally published and adopted into guidance, NHS pathways remain anchored to the 2017 standards. hEDS exists within systems like SNOMED CT, but local practice varies widely. ICD-10 coding remains inconsistent, and that inconsistency has consequences.

This is not a bureaucratic footnote. It determines whether referrals are accepted, whether multidisciplinary care is offered, and how seriously a diagnosis is recorded within medical records. For patients, this shapes everything from access to physiotherapy and pain services to workplace adjustments and social support.

Why this matters

Every month spent waiting on criteria is a month without optimal diagnosis.A month without access to appropriate multidisciplinary care.A month of symptoms experienced quietly while the system keeps reading the same manual.

Each person sitting in a waiting room, joints creaking while policy catches up, carries the human cost of diagnostic inertia.

“In war, good people don’t always get happy endings. Sometimes they just vanish.”That line still fits. Not because anyone has failed, but because delay has weight. And that weight lands on patients first.

The glimmer ahead

What people are hoping for is not perfection. It is progress.

Criteria that integrate clinical presentation with functional impact.Clearer relationships between hEDS and HSD so fewer people feel half-recognised.Guidance that gives clinicians confidence to diagnose earlier and more consistently.Transparent inclusion of lived experience, not as a footnote but as evidence.

Even incremental movement on these fronts would change daily care for thousands.

Meanwhile, in the waiting room

Until the curtain fully rises, here are a few steady truths to hold onto.

Your symptoms are real. A delayed framework does not make you wrong.Document everything. Referrals, assessments, outcomes. That paper trail will matter.Stay connected to reputable updates from research bodies and patient organisations. This is science, but it is also structure.Hope patiently. Not blindly, but informed. Change that arrives late can still arrive strong.

The curtain will rise. When it does, you deserve to be standing in the light.

Love,Unremarkable Me

Sources and further reading

The Ehlers–Danlos Society. Road to 2026 initiative, criteria updates, and research summaries.https://www.ehlers-danlos.com

2017 international diagnostic criteria and assessment frameworks, including Beighton scoring.https://www.ehlers-danlos.com/heds-diagnostic-checklist

hEDS and HSD Criteria Review Study updates and timelines.https://www.ehlers-danlos.com/research

HEDGE Study genetic research programme.https://www.ehlers-danlos.com/hedge

UK context on SNOMED CT and diagnostic coding within the NHS.https://digital.nhs.uk/services/snomed-ct