The 2017 International Classification of the Ehlers–Danlos Syndromes publication was a pivotal moment that reshaped the understanding of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). This update laid the foundation for many research studies, all working towards a greater understanding of all types of EDS and HSD and how the conditions can be managed.
Progress Driven by Research
Empowered with the latest research, worldwide clinical and patient experience, and through engagement with health professionals and our community, an expert committee from the International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders (IC) is now embarking on The Road to 2026.
What Is The Road to 2026?
The Road to 2026 is the pathway toward updating the 2017 International Classification. It is a global process led by experts from the International Consortium on EDS and HSD. This update reflects new scientific knowledge and aims to improve how EDS and HSD are understood, diagnosed, and managed.
Once finalized and peer-reviewed, the outcomes will be published in two special editions of the American Journal of Medical Genetics Part C, a leading journal for genetic and rare disease research.
The publications will include:
- An Update of the Classification Criteria: A comprehensive review and update of the classification framework for all types of Ehlers-Danlos syndromes and hypermobility spectrum disorders. This will be published on December 2, 2026.
- Assessment and Treatment Best Practice Updates: Practical guidance for doctors and therapists on the assessment and management of symptoms and comorbidities that impact our community’s health, well-being, and quality of life. Information on the monogenic types of EDS will be published on December 2, 2026, and information regarding hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders will be published in March 2027.
- A Diagnostic Pathway: A diagnostic pathway for clinicians to diagnose Ehlers-Danlos syndromes and hypermobility spectrum disorders will be published in March 2027.
The Ehlers-Danlos Society will fund open access to ensure health professionals and community members can access them for free. Accessible resources, including plain language summaries, guides, and tools, will also be developed and shared.
Why Is This Work Being Done?
Since publication of the 2017 International Classification, research has revealed new information about the Ehlers-Danlos syndromes and hypermobility spectrum disorders. These new insights show the need to update the classification to reflect the latest understanding of these conditions.
Updating classification criteria is a normal and important part of medical practice. In some areas of medicine, classifications may be updated every few years, while others evolve more gradually as research advances. As new evidence becomes available, disease definitions are reviewed and refined to reflect the latest scientific understanding. This helps ensure that diagnoses remain accurate, consistent, and useful for both clinicians and patients.
Best practice in this process includes reviewing research evidence, drawing on a breadth of clinical expertise, incorporating lived experience, and ensuring that any updates are carefully evaluated and independently peer reviewed before publication. The Road to 2026 follows this approach.
Classification criteria are a way of defining and identifying different types of EDS and HSD, so healthcare professionals can diagnose and treat them consistently. Classification systems are used across medicine to help organize, define, and identify health conditions in a clear and consistent way.
For many people, the diagnostic process remains a long journey marked by years, often decades, of uncertainty. Earlier and more accurate diagnosis can help people access appropriate care and support sooner.
As part of this work, a diagnostic pathway will help guide healthcare professionals in identifying types of EDS and HSD more effectively.
The multisystem nature of these conditions means many people require care from multiple specialists. This can make care difficult to navigate.
To address this, assessment and treatment updates will also be published to support healthcare professionals in managing symptoms and associated conditions more effectively.
What Will Be Involved in The Road to 2026 Work?
Key questions guiding the work include:
- What should the structure and naming of these conditions look like in the future?
- What diagnostic tools and criteria best capture the features of these conditions?
- How might updates affect diagnosis and care around the world?
- How do hypermobile Ehlers-Danlos syndrome (hEDS) and the hypermobility spectrum disorders (HSD) relate to each other and to other types of EDS?
Each question is being carefully reviewed, and updates will be evidence-based, clinically meaningful, and informed by community experience. The committee’s findings will then go through independent scientific peer review before publication.
Who Is Involved in The Road to 2026?
The Road to 2026 Committee includes independent experts from the International Consortium, alongside community representation. Learn more.
The Ehlers-Danlos Society representatives are non-voting members and do not determine scientific outcomes. Learn more.
How Is Lived Experience Included in This Work?
Lived experience is central to The Road to 2026, and community feedback has been gathered through two surveys to help ensure future updates reflect real-world challenges and needs:
| Your Voice Matters (April 2024)
Captured community questions, hopes, and concerns about The Road to 2026. |
2025 EDS & HSD Community Experience Survey (May 2025)
Explored how EDS and HSD affect daily life, access to care, and healthcare experiences. This will be published in the American Journal of Medical Genetics. |
What Is the Ehlers-Danlos Society’s Role in The Road to 2026 Work?
The Society:
- Provides funding and administrative support
- Facilitates global collaboration
- Ensures lived experience is included
Study design, data collection, analysis, interpretation, and final publications are led and determined by the clinical academic experts. While The Society facilitates and has a role in informing and supporting The Road To 2026 process, The Ehlers-Danlos Society representatives on the Committee are not voting members and do not vote on any decisions made by the Road To 2026 committee.
All final outputs will undergo independent peer review prior to publication.
Learn more about The Society’s role here.
Have a question about the Road to 2026?
Please note: The information shared on this page reflects the current stage of The Road to 2026 work and is expected to evolve as research progresses, additional data becomes available, and the review process continues. As this is an active scientific process, updates and revisions to content, terminology, and timelines may occur throughout the development of the final publications.
The Ehlers-Danlos Society will keep its community updated on how the Road to 2026 program is progressing. Sign up for our CONNECT newsletter to stay updated or follow us on social media.
