The EDS Diagnostic Criteria Are Being Updated in December 2026. Here Is How Sequencing Is Preparing.

Short answer: The first major update since 2017 to the classification and diagnostic criteria for the Ehlers-Danlos syndromes and hypermobility spectrum disorders is scheduled for publication in December 2026. It is not a genetic test for hypermobile EDS or HSD, and The Ehlers-Danlos Society says people who already have a diagnosis do not need to be reevaluated.

In December 2026, the international EDS community gets its first major revision, since 2017, to the diagnostic criteria for the Ehlers-Danlos syndromes and hypermobility spectrum disorders. The updated criteria are scheduled for publication in the American Journal of Medical Genetics, with a follow up publication covering care and management pathways expected in March 2027.

If you live with EDS or HSD, or you are still working toward an answer, this is a date worth marking. We want to tell you now what we know, what we do not know yet, and what our team will be doing the week the criteria are released.

What is actually changing

The update comes out of a multiyear international effort led by experts from the International Consortium on EDS and HSD, with funding and organizational support from The Ehlers-Danlos Society. It is built from systematic literature review, clinical expertise, formal consensus methodology, and peer review, with input from people who live with these conditions.

The December publication is expected to update the classification framework, including how EDS types and HSD are defined, named, and grouped. A separate diagnostic pathway for clinicians is expected in March 2027. Beyond that, the specifics are not public. Research into the genetics of hypermobile EDS and HSD is ongoing. Current public findings have not identified a single genetic cause or reliable molecular test for either condition. Until the final publications are released, we will not know whether they contain new gene or variant evidence relevant to our reports.

We would rather state that clearly than speculate about conclusions that are not yet public.

Why this matters for whole genome data

Classification updates can matter to genomic testing when they include new evidence about the relationships between genes and diseases, or about specific variants. After publication, our team will assess whether any such evidence warrants changes to the genes, variants, or interpretations included in our reports.

This is where whole genome sequencing has a practical advantage. Sequencing analyzes 100% of your DNA, covering over 30,000 genes, not a preselected panel. Your raw data does not need to be recollected when the science moves. The sample you already provided contains the regions in question. What changes is the analysis applied to it.

That is a large part of why people choose whole genome sequencing, and why they choose Sequencing. When new evidence is published, your existing data can be reviewed against it, with no new kit and no new sample.

What Sequencing is doing

Our variant curation and bioinformatics teams will be reading the publication the day it is available. From there, our process is straightforward.

1. Review the publication in full. We assess exactly what changed in the classification framework, the criteria, and any gene or variant content.
2. Map the changes against our current EDS analysis. We compare the published content to what our reports already cover, including our EDS AI report Emerging Research section.
3. Determine what can be incorporated, and at what evidence level. If newly described variants meet our standards, they can be added with the appropriate Evidence rating. If the publication provides additional support for findings currently rated Preliminary, those findings may qualify for a higher Evidence rating. Both decisions will depend on the strength and quality of the evidence presented in the final publication.
4. Update reports and tell members what changed. Once the curation and bioinformatics teams complete their work, any warranted changes are incorporated into eligible reports and made available through your account. We will let members know when relevant updates are available and explain what changed and why.

We are committing to the speed and the transparency. We are not committing to a particular result, because the outcome depends on findings that are not yet public.

What this does not mean

A few points we want to be clear about, so you know what this update does and does not mean.

• If you were diagnosed under an earlier framework, you do not need to be reevaluated solely because the classification is changing. The Ehlers-Danlos Society states that for people who already have a diagnosis from a framework published before 2026, there is no need to be reevaluated. See the Road to 2026 FAQs.
• A classification update is not a genetic test for hypermobile EDS or HSD. These conditions remain clinical diagnoses, while most other EDS types can be confirmed through genetic testing. Diagnosis should be made by a qualified healthcare professional.
• Genomic findings do not replace a clinical evaluation and do not, by themselves, establish or rule out a diagnosis. Results should be interpreted with a qualified healthcare professional.
• If the publication does not alter the established genetic variants, we will say so. A quiet update is a legitimate outcome and we will report it honestly.

What you can do before the December 2026 update

If you already have a Sequencing account, you do not need to do anything. Your data is stored and any warranted report updates will be applied to it.

If you have been considering whole genome sequencing, having your data already in hand means any warranted report updates can be applied to it as soon as they are available, rather than starting the process afterward.

You can follow the official announcement from The Ehlers-Danlos Society here.

We will publish a follow up once the criteria are released and our team has completed its review.

Related Articles

• Ehlers-Danlos Syndrome: our guide to the types of Ehlers-Danlos syndrome and genetic testing.
• Ehlers-Danlos Type 3 (hEDS): Symptoms and Testing: why no gene test confirms hypermobile EDS.
• Joint Hypermobility Syndrome: how hypermobility is assessed.
• Why We’re Launching the Largest Patient Driven Genetic Study for hypermobile Ehlers-Danlos Syndrome and Dysautonomia: how Sequencing customers can choose to take part in research on hEDS and dysautonomia.

Get Tested With Whole Genome Sequencing

Our whole genome sequencing screens all genes known to be associated with Ehlers-Danlos syndromes. This includes the established genes linked to classical and vascular forms, as well as emerging research markers such as KLK15, which has a preliminary research link to hEDS. Hypermobile EDS and hypermobility spectrum disorders remain clinical diagnoses, so bring your results to a clinician who knows these conditions.

Shop All Whole Genome Sequencing Kit Bundles

Frequently Asked Questions About the EDS Criteria Update

When will the new EDS diagnostic criteria be published?

The Ehlers-Danlos Society's Road to 2026 FAQ lists December 2, 2026 for the updated classification framework, to be published in the American Journal of Medical Genetics. The Society's announcement page lists December 1, so check the Society's site for the final date. A diagnostic pathway for clinicians is expected in March 2027.

Do I need to be reevaluated if I already have an EDS or HSD diagnosis?

The Ehlers-Danlos Society states that people who already have a diagnosis from a framework published before 2026 do not need to be reevaluated. Talk with your clinician about your own care.

Is there a genetic test for hypermobile EDS or HSD?

No. Current public findings have not identified a single genetic cause or reliable molecular test for either condition. These conditions remain clinical diagnoses, while most other EDS types can be confirmed through genetic testing.

How will Sequencing use the new criteria?

After publication, our team will assess whether any new evidence warrants changes to the genes, variants, or interpretations in our reports. Eligible reports will be updated, and we will let members know what changed and why.

Do I need a new kit when the criteria change?

No. Whole genome sequencing reads 100% of your DNA, so a new sample is not needed for report updates. Whether any updates are warranted depends on the final publication.

Sources

1. The Ehlers-Danlos Society. A major update is coming to EDS and HSD diagnosis. ehlers-danlos.com
2. The Ehlers-Danlos Society. The Road to 2026 FAQs. ehlers-danlos.com/road-to-2026/faqs
3. Malfait F, Francomano C, Byers P, et al. The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017. doi:10.1002/ajmg.c.31552

This article is for education and is not a substitute for professional medical advice, diagnosis, or treatment. Talk to a qualified healthcare provider about your own health.