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 path and process toward an update of the 2017 International Classification of the Ehlers-Danlos syndromes. The aim of this update is to advance the understanding and management of EDS and HSD on a global scale, reducing the time to diagnosis, and improving care. This work is anticipated to be completed and published in late 2026.
The work will involve a thorough examination of what is currently known about EDS and HSD and an assessment of what is needed to improve global access to diagnosis and care.
The following key elements will be considered:
- An Update of the Classification Criteria: A comprehensive review and update of the classification framework.
- A Diagnostic Pathway: A clinically tested and refined diagnostic guide for EDS and HSD.
- Creation of Assessment and Treatment Pathways: Practical guidance on the assessment and management of symptoms and comorbidities that impact our community’s health, well-being, and quality of life.
The following key elements will be considered:
- An Update of the Classification Criteria: A comprehensive review and update of the classification framework.
- A Diagnostic Pathway: A clinically tested and refined diagnostic guide for EDS and HSD.
- Creation of Assessment and Treatment Pathways: Practical guidance on the assessment and management of symptoms and comorbidities that impact our community’s health, well-being, and quality of life.
How Can You Get Involved? Your Voice Matters!
You may have questions about how these changes could affect you or someone you care for. Your voice matters, and we are here to support you.
The Ehlers-Danlos Society launched a feedback form in April 2024 to collect your questions, hopes, and concerns. Your responses have been gathered and sent to The Road to 2026 committee across the year, and the feedback form remains open to ensure as many voices as possible are heard. We have translated this survey into nine languages to capture vital global experiences. This form will soon close as we launch the Community Experience Survey in March 2025.
To take part in this feedback form, please click the appropriate link below:
The Ehlers-Danlos Society’s role in the Road to 2026 is to bring the patient voice to the table, and we need your help to do that. By taking part in the 2025 EDS & HSD Community Experience Survey, launching March 2025, you have an incredible opportunity to shape the future of these conditions.
This survey will capture the real-world experiences of the EDS and HSD community, focusing on critical topics, such as:
- The diagnostic journey
- The diagnostic criteria and classification
- Symptoms and management
- Barriers and access to care
- Impact on daily life, including work, school, and relationships
- Mental health and emotional well-being
- Financial impact
The results of this survey will be shared with the Road to 2026 Scientific Committee and will be used to publish a paper in a Special Issue of the American Journal of Medical Genetics alongside the Road to 2026 classification update.
The survey will be run through our DICE EDS & HSD Global Registry, and existing registry participants will receive a direct invitation to participate when the survey launches. To learn more about joining the Registry click here.
Who Is Involved in The Road to 2026?
A committee from the International Consortium (IC) on EDS and HSD will be working together and with wider stakeholder groups, including global experts in EDS and HSD, community members sharing lived experience, and Community Experts from each IC Working Group, over the next 2-3 years. The Road to 2026 committee includes leading experts in the Ehlers-Danlos syndromes and hypermobility spectrum disorders, covering a breadth of experience in clinical expertise and research.
The Community Voice: Nothing About Us, Without Us
Although the science and research outcomes will be driven by the healthcare professionals in the committee, the inclusion of the community voice, and voices from community-focused organizations are critical in this process to ensure that lived experience is included from conception to delivery.
Representatives from The Ehlers-Danlos Society will be on the committee and will ensure a diverse range of community voices are collected and integrated into this research process to highlight systemic issues and reflect the lived experiences of our community globally. The IC Working Groups each have a Community Expert sharing lived experiences and ensuring community experiences and realities are represented.
The Ehlers-Danlos Society has committed to providing administrative and financial support to all aspects of bringing together The Road to 2026 committee for this important work and global collaboration, and to ensure the community’s voice is heard and represented effectively. The Ehlers-Danlos Society’s representatives will provide updates following each meeting to inform our community along the way.
| The members of the committee are: | ||
The Community Voice: Nothing About Us, Without Us
Although the science and research outcomes will be driven by the healthcare professionals in the committee, the inclusion of the patient and patient organization voice is critical in this process to ensure that lived experience is included from conception to delivery.
Representatives from The Ehlers-Danlos Society will be on the committee and will ensure a diverse range of community voices are collected and integrated into this research process to highlight systemic issues and reflect the lived experiences of our community globally.
The Ehlers-Danlos Society has committed to providing administrative and financial support to all aspects of bringing together The Road to 2026 committee for this important work and global collaboration, and to ensure the community’s voice is heard and represented effectively. The Ehlers-Danlos Society’s representatives will provide updates following each meeting to inform our community along the way.
The members of the committee are:
- Jessica Bowen
- Dr. Peter Byers
- Professor Marina Colombi
- Dr. Serwet Dermidas
- Dr. Clair Francomano
- Assoc. Professor Dr. Alan Hakim
- Dr. Glenda Sobey
- Dr. Hanandi Kazkaz
- Professor Fransiska Malfait
- Dr. Roberto Mendoza
- Professor Marianne Rohrbach
- Dr. Sherene Shalhub
- Professor Lara Bloom, CNE
- Scarlett Eagle
- Rebecca Gluck, PA-C
What Will Be Involved in The Road to 2026?
The Road to 2026 committee work will include:
- Review all the relevant published literature and experience since the publication of the 2017 International Classification.
- Consideration of all the findings that are expected to come out over the next couple of years from important research studies such as the HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) Study and other molecular research, the hEDS/HSD Criteria Review Study, and studies into all types of EDS and HSD.
- Identifying topics that need to be discussed when considering whether changes should be made to the criteria.
- Exploration of these topics with clinicians, academics, and the community more widely to reach consensus agreement and ensure all necessary topics are covered.
- Identifying further work that needs to be done to resolve questions that cannot be answered without additional research.
- Proposal of changes (if any) to the criteria and seek stakeholder opinion on these proposals, including opinions from the EDS and HSD community.
- Producing recommendations and testing them in clinical practice if necessary.
The committee’s findings will then go through rigorous scientific peer review.
The Road to 2026 Timeline and Outcomes
- Throughout 2024 and 2025, The Road to 2026 committee will meet and go through the review and assessment process of the above points. In anticipation of these meetings, The Ehlers-Danlos Society launched a feedback form in April 2024 for hopes and concerns in nine languages, which will be collated and given to the committee for review.
- In March 2025, The Ehlers-Danlos Society will launch a comprehensive Community Experience Survey which will capture the real-world experiences of the EDS and HSD community, focusing on critical topics. The results of this survey will be shared with the Road to 2026 Scientific Committee and will be used to publish a paper in a Special Issue of the American Journal of Medical Genetics alongside the Road to 2026 classification update.
- At The Ehlers-Danlos Society’s 2025 International Scientific Symposium in Toronto, Canada, The Road to 2026 committee will meet with the scientific community to discuss its findings to date and to engage with stakeholders.
- The final publication will be published in two Special Issues of the American Journal of Medical Genetics, released in late 2026 and early 2027, with authorship from The Road to 2026 committee and their invited collaborators across a breadth of expertise in EDS and HSD.
- The Ehlers-Danlos Society will fund the publication’s open access to ensure all health professionals and patient communities globally can access this for free.
- The Ehlers-Danlos Society will ensure accessible resources and materials are created from this publication and made available in multiple languages for community members and clinicians worldwide to use in clinical practice on its website and app. They will include the publications, lay versions of the papers, management guides, videos, resources, explanatory guides of what’s new, diagnostic pathway and tools, and management pathways.
Updates
The Road to 2026 Committee met in London on October 16-17 to continue their work.
During the meeting, the group reviewed the status of proposed publications and discussed methodology for a systematic literature review on EDS and HSD. This review aims to consolidate the latest research findings to advance our understanding of EDS and HSD. They considered the next steps for sharing the Delphi survey, which was developed by the group to collect expert opinions from around the world.
The committee also discussed the structure and content for the 2025 International Scientific Symposium, which will take place in Toronto, Canada in September 2025. This hybrid event will include:
- Didactic Presentations: Showcasing cutting-edge research and advancements in the understanding of EDS and HSD.
- Poster Sessions: Highlighting diverse studies from researchers around the world.
- Interactive Workshops: Providing hands-on learning opportunities for professionals.
- Community Day: Dedicated to individuals affected by EDS and HSD worldwide.
The Road to 2026 Committee met in Philadelphia on July 22-23, 2024, to advance the development of diagnostic pathways for EDS and HSD. The pathways are designed to increase awareness, reduce diagnostic delays, and guide healthcare professionals who are not familiar with EDS and HSD.
During the meeting, the committee addressed key diagnostic challenges faced by our community and discussed features that distinguish the different types of EDS. The group explored strategies to make the diagnostic pathways more accessible, including delivering them through an interactive digital platform.
Progress was made on the Delphi study, a research survey technique that will be used to collect expert opinions on EDS and HSD. The committee reviewed and discussed the latest draft of the first survey, with final edits now in progress.
The discussions also focused on the committee’s publication strategy for 2026. The group is collaborating with experts from the International Consortium on EDS & HSD to curate a collection of articles that are both relevant and practical to our community.
The Road to 2026 Committee met in New York on April 13-14, 2024, to discuss the next stages of their work:
The group met with a consultant who is advising them on conducting a Delphi study to collect expert opinions on the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). A Delphi study is a research survey technique that uses a series of questionnaires to achieve expert consensus on a topic.
For Round 1 of the study, the committee is creating a questionnaire to send to experts on the International Consortium on EDS and HSD to gather their opinions on topics related to the Road to 2026. The results will identify topics that have expert consensus and topics that do not.
In Round 2, the experts will review the results from Round 1 and fill out a second questionnaire containing the non-consensus issues from Round 1. Experts may adjust their responses based on the results from Round 1.
Additional rounds may be conducted until an acceptable level of consensus is reached. The study will help guide the Road to 2026 work by identifying topics that have expert consensus and topics that are controversial.
The group also discussed plans for the publication and dissemination of the Road to 2026 work and is working with publishers to ensure that updated information about EDS and HSD is widely available.
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.
