The Road to 2026 is the pathway toward updating the 2017 International Classification. It is a 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.

The 2026 International Classification work is an active scientific process that engages research and community member perspectives to develop an updated framework for diagnosis and care. Once finalized and peer-reviewed, both the new classification and the research studies that informed the work of the Road to 2026 Committee will be published in two special edition volumes of the American Journal of Medical Genetics Part C. These will provide practical guidance to improve diagnosis and care globally.

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.
• A Diagnostic Pathway: A diagnostic guide for clinicians to diagnose the Ehlers-Danlos syndromes and hypermobility spectrum disorders. This will be published in March 2027.
• 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.

The Ehlers-Danlos Society will fund open access to the publications to ensure health professionals and community members can access them for free.

The Ehlers-Danlos Society will also ensure accessible resources and materials are created from these publications to be made available on its website and app in multiple languages for community members and clinicians worldwide to use in clinical practice. They will include the publications, videos, resources, explanatory guides to what’s new, diagnostic pathways and tools, and management guides.

Classification criteria are a way of clearly defining and identifying different types of EDS and HSD, so healthcare professionals can diagnose and treat them consistently. Classification criteria are used across medicine to help organize, define, and identify health conditions in a clear and consistent way.

For many people with EDS and HSD, the diagnostic process is a long journey marked by years of uncertainty and frustration. This process can be physically, emotionally, and financially challenging for our community. Having a diagnosis can help people get the care they need to manage their symptoms.

As part of The Road to 2026, experts will develop a diagnostic pathway to help healthcare professionals determine if someone has a type of EDS or HSD. The goal of the diagnostic pathway is to facilitate early diagnosis and improve tools for healthcare professionals to implement in clinical practice.

The signs, symptoms, and complications of the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and associated conditions are diverse. The multisystemic nature of these conditions means that many people with a type of EDS and HSD require multiple doctors in different specialties to manage their care. This can make care more difficult to navigate for both the patient and provider.

Experts from the International Consortium are working to update guidance for the assessment and treatment of common symptoms and comorbidities, to help healthcare professionals better serve their patients. These will guide healthcare professionals from symptom recognition through management.

The Road to 2026 work represents years of research, international collaboration, expert opinion and consensus, and lived experience, all aimed at improving diagnosis and care worldwide.

The work includes:

• Review of the research literature published on EDS and HSD
• Global clinical expertise and structured expert input
• Structured lived-experience input
• Independent peer review

This process brings together scientific work designed to ensure accuracy and credibility. The findings will then go through scientific peer review.

Lived experience is central to this work, and community feedback has been gathered through two surveys to help ensure future updates reflect real-world challenges and needs. Representatives from The Ehlers-Danlos Society are included as non-voting members of the committee to ensure a diverse range of community voices are collected and integrated into this research process to highlight systemic issues and reflect the global lived experiences of our community. The International Consortium on EDS and HSD Working Groups that are working on The Road to 2026 each have a Community Expert sharing lived experiences and ensuring community experiences and realities are represented.

Facilitation and Funding

The Ehlers-Danlos Society is providing administrative support and financial support for The Road to 2026 work, furthering its commitment to advancing research, education, and clinical care for EDS and HSD.

Bringing Lived Experience Perspectives and Expertise

The Ehlers-Danlos Society has representatives on the Road to 2026 Committee to contribute expertise and community lived experience perspectives to the Road to 2026 process.

The Ehlers-Danlos Society does not control the scientific work.

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. The Ehlers-Danlos Society representatives are:

Professor Lara Bloom, CNE—President and CEO of The Ehlers-Danlos Society

Non-voting member

Lara is an Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration (Penn State College of Medicine). Lara’s main role on the committee is to bring in the lived-experience voice, and to secure the funding for the research and dissemination process of the publication and outcomes.

Dr. Alan Hakim, MA, FRCP—Past Chief Medical and Scientific Officer (2024-2026), Biobank and DICE Global Registry Principal Investigator, The Ehlers-Danlos Society

Non-voting member

Dr. Hakim is an Acute Physician and Rheumatologist with a specialist interest in heritable disorders of connective tissue. Dr. Hakim is the hEDS/HSD Working Group Chair in the International Consortium on EDS and HSD. Dr. Hakim is the Principal Investigator (PI) of the hEDS/HSD Criteria Review Study, PI of the Expert Delphi Study on the Classification, Differentiation, and Conceptualization of Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD), and PI of the DICE Global Registry Community Survey.

Scarlett Eagle—Community Education Manager of The Ehlers-Danlos Society

Non-voting member

Scarlett is the lead author of the 2025 EDS & HSD Community Experience Survey and brings in lived experience through its responses from the global community on the realities of navigating diagnosis, care, and daily life. She also brings experience from her work on The Society’s Helpline, Inspire forum, EDS & HSD Global Alliance, and creating accessible educational resources about EDS and HSD.

Rebecca Gluck—Physician Assistant and previous staff member of The Ehlers-Danlos Society

Non-voting member

Rebecca is a Physician Assistant and former Community Education Director at The Ehlers-Danlos Society, who led many of its community-based programs including the Helpline and Virtual Support Groups. Rebecca is a bridge to both the provider and community lived experience.

The Ehlers-Danlos Society representatives Lara Bloom, Scarlett Eagle, and Rebecca Gluck will be authors on the final publication in December 2026 due to their lived experience expertise only, and not because of their role in any decision making or scientific consensus. Dr. Alan Hakim is a Guest Editor for this issue of the American Journal of Medical Genetics Part C and lead author on submitted manuscripts of the studies for which he is PI. For these, he has no role in peer review selection of his work or senior editorial decisions, which are handled by the American Journal of Medical Genetics.

No. Lara is a non-voting member of the Road to 2026 Committee and does not vote on or decide scientific outcomes such as classification or diagnostic criteria. Lara’s main role is to bring in the lived-experience voice and to raise funds for the research and dissemination process of the publication and outcomes. This was the same for the 2017 classification and criteria.

Yes. Review of the classification for each of the monogenic types of EDS is a major part of the work being undertaken.

Each monogenic type of EDS will have dedicated focus within the updated classification publication, alongside the development of diagnostic, assessment, and treatment pathways intended to support earlier recognition and more consistent care.

The Road to 2026 includes a comprehensive review of the latest international research evidence relating to each type of EDS. This includes updated understanding of:

• Clinical features and presentation
• Genetic findings
• Associated symptoms and complications
• Assessment and diagnostic approaches
• Management and care considerations

While most types of EDS are associated with known genetic changes, researchers are still working to better understand how those genetic changes lead to the wide range of symptoms and clinical presentations seen across individuals.

People with the same type of EDS can sometimes experience very different symptoms, complications, severity, and care needs. This can create challenges for diagnosis, management, and long-term care.

The monogenic types of EDS are individually rare, and some can involve severe or life-threatening complications affecting blood vessels, organs, the eyes, skin, bones, or other body systems. Ensuring these types are accurately recognized and appropriately managed remains an important part of The Road to 2026 work. This work is being informed through systematic literature review, expert clinical input, research evidence, and lived experience perspectives.

The goal is to help ensure that the updated classification and care pathways better reflect current scientific understanding and support improved recognition and care across all types of EDS.

This work also connects to wider international efforts to advance understanding and care for the genetically defined types of EDS, including precision medicine approaches that aim to better understand why people with the same diagnosis can experience different symptoms, complications, and care needs.

As part of this broader work, The Ehlers-Danlos Society will host the Precision Medicine for Genetically Defined Ehlers-Danlos Syndromes event in September 2026, bringing together researchers, clinicians, patient representatives, and other stakeholders to help advance collaboration and future research in this area.

Research evidence is the foundation of The Road to 2026, with a wide range of international studies and publications helping to improve understanding of these conditions. The work includes an extensive review of the literature to reflect the latest findings about the Ehlers-Danlos syndromes and hypermobility spectrum disorders across the landscape. Some of these studies are still ongoing, and the results will be considered and published in 2026 and 2027.

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 HEDGE study is still ongoing. Researchers have sequenced the genomes of 1,000 people with a clinical diagnosis of hEDS according to the 2017 diagnostic criteria for hEDS, along with 45 people with HSD.

Early analysis ruled out other known types of EDS and related connective tissue disorders in the participants. Only a few participants from the cohort had their diagnosis reclassified after genetic testing showed they had a monogenic type of EDS or other connective tissue disorder with known genetic causes.

Analysis has identified 81 major symptom groups and more than 900 less common symptoms, giving the most complete picture of these conditions to date.

The HEDGE analysis team has also scanned the genome for regions linked to hEDS and checked for disease-causing duplications or triplications, but no single gene has yet been identified to explain hEDS or HSD. The current phase is exploring additional regions of the genome. For now, this means there is still no molecular test to confirm these conditions, and diagnosis remains based on the clinical criteria.

HEDGE has also looked at the following genes which you may have read about online:

• MTHFR: Despite much discussion online, analysis showed no connection to hEDS.
• TNXB: Rare variants were 3–5 times more common in hEDS, but still very uncommon (about 1%). TNXB may play a role in a small number of cases but is not the main cause.
• KLK15: A previous publication by the Norris Lab suggested a link to hEDS, but in HEDGE, KLK15 variants were not more common in participants than in controls. While KLK genes could still play a role for some, the data show that KLK15 is not a universal cause of hEDS.

Learn more about the HEDGE Study. 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.

There are several ongoing studies looking at potential biomarkers, measurable changes in the body that may help researchers better understand or identify a condition. These studies are looking at proteins, RNA, and DNA modification.

It is still too early to know whether these findings could eventually lead to diagnostic tests or new treatment approaches.

What this means for The Road to 2026 is that there is currently no reliable laboratory test to confirm or rule out hEDS or HSD, so diagnosis still relies on clinical evaluation and criteria.

The 2017 international diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hEDS) and the framework for hypermobility spectrum disorders (HSD) were a major step forward in defining these conditions. However, clinicians and patients worldwide have raised important questions about whether the current criteria capture the full range of signs, symptoms, and associated conditions seen in people with hEDS and HSD.

The hEDS/HSD Criteria Review Study was launched to address these questions and to refine the diagnostic criteria so that they are:

• More inclusive of the diversity of patient presentations.
• More reflective of the current understanding of features and associated conditions.

This study is being undertaken by the hEDS/HSD Working Group of the International Consortium on the Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders.

The study aims to:

• Identify signs, symptoms, and comorbidities that most effectively differentiate hEDS and HSD from other chronic pain disorders.
• Evaluate additional joint assessments beyond the Beighton score to improve recognition of generalized joint hypermobility.
• Develop and test revised diagnostic models for hEDS and HSD to improve accuracy and reduce misdiagnosis.
• Explore potential future integration of genetic and biomarker findings (for example, from the HEDGE Study) into revised diagnostic frameworks.

Early findings presented at the 2025 International Scientific Symposium on EDS and HSD include:

• Certain combinations of features are more common in people with hEDS and HSD than in people with other musculoskeletal chronic pain conditions.
• One example discussed was the presence of at least three of four skin-related features, which was more common in people with hEDS and HSD.
• No single feature or measure has been identified that completely separates hEDS from HSD on its own.

These findings support growing evidence that hEDS and HSD may exist on a shared spectrum with overlapping features and associated conditions.

The research team is testing both:

• An expanded 4-joint hypermobility assessment alongside the Beighton score.
• A proposed revised model for diagnosing hEDS and HSD.

The revised model is being tested in a second study in real-world clinical practice to evaluate whether they improve diagnostic accuracy and ease of use. Future studies may integrate potential genetic or biomarker findings if identified during or after this study. Final peer-reviewed results and recommendations for any updates to the diagnostic criteria are being published in December 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.

We understand the 2026 update may generate feelings of uncertainty for people who already have a diagnosis. For those who already have a diagnosis using one of the pre-2026 frameworks there is no need to be reevaluated.

The update reflects a decade of new scientific evidence and builds on previous findings. Once published, the updated classification will recommend that the new information be used by clinicians and researchers moving forward to support diagnosis, care, and management of symptoms.

The Ehlers-Danlos Society is working on insurance, Medicaid, ICD-10 and ICD-11 coding, federal funding, clinical pathways, education and resources for doctors, and many aspects to improve care in parallel with The Road to 2026.

The Road to 2026 is a scientific process, and many questions are still being explored. Updates shared so far are intended to provide transparency about ongoing work, not to present final conclusions.

All final conclusions will only be confirmed once the research is complete and has undergone full, independent peer review. There will be a period of time when the authors and members of the committee will be aware of the outcomes, but unable to share until the publication date. This is because of the journal embargo rules that are put in place during every publication process.

The Ehlers-Danlos Society will fund open access to the publications to ensure health professionals, researchers, and community members can access them for free through the American Journal of Medical Genetics, Part C.

The Ehlers-Danlos Society will develop accessible educational resources based on these publications and make them available in multiple languages on our website and app for community members and clinicians worldwide. Resources will include the publications, management guides, videos, resources, explanatory guides to what’s new, diagnostic pathways and tools, and management pathways. All Society educational programs for clinicians, such as EDS ECHO, will be updated with the new information.

Improving diagnosis and care requires change across the entire healthcare system, and we will work to support implementation of The Road to 2026 publication beyond research and into real-world care. This will include initiatives to:

• Help us understand and address barriers to diagnosis, particularly in primary care, and develop tools to support clinicians.
• Support alignment of diagnosis and care updates with ICD-10/ICD-11 coding, insurance systems, and healthcare infrastructure.
• Develop a new Model of Care, so that people with Ehlers-Danlos syndromes and hypermobility spectrum disorders can access coordinated, effective care after diagnosis.
• Help increase prioritization and access to federal funding for these conditions.

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.