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 worldwide.

The 2026 International Classification work is an active scientific process, that engages research and community member perspectives to develop updated framework for diagnosis. Once finalized and peer-reviewed, both the new Classification and the research studies that informed the Committee’s 2026 work 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.

This publication is only one part of improving diagnosis and care. The Model of Care collaboration will help translate these insights into practical, real-world health system approaches, including how healthcare systems operate, how clinicians are supported, and how care is delivered in practice.

The Model of Care is being developed to reflect the complex, multisystem nature of EDS and HSD, including associated symptoms and conditions, as well as the fact that many people first present to primary care providers.

It focuses on how care is coordinated across different parts of the health system, including when specialist input is needed, with a strong emphasis on the role of primary care teams.

The Model of Care is intended to support:

• Clinical guidance and education
• Healthcare policy and system design
• Future implementation and funding efforts

The goal is to provide a clear, community and evidence-informed framework that can be adopted and adapted across healthcare systems.

This is a sponsored research agreement funded by The Ehlers-Danlos Society and administered through Brigham and Women’s Hospital.

This is a research collaboration to co-design a new Model of Care for people living with EDS and HSD. Most people first seek help in primary care. However, many primary care providers have had limited training in EDS and HSD, may not have clear guidance to follow, and can be unsure when to refer on for further assessment. Primary care teams are often the best people to provide longitudinal, coordinated care for chronic, long-term conditions. However, primary care teams are not always aware of how common approaches and tools that they use every day are also applicable to people with EDS and HSD.

This work focuses on developing a primary care–anchored model of care, so frontline clinicians and teams are better supported to recognize signs earlier, understand when something more complex may be happening, connect people to the right care sooner and appropriately coordinate care over time.

This collaboration does not recommend or direct patients to any hospital or provider. It does not create a referral pathway and does not change where people can access care today.

The research is focused on how care should work within healthcare systems, not where individuals should go for treatment.

Yes. We are hearing and acknowledging the experiences being shared.

Many people in the EDS and HSD community have faced delays, dismissal, or difficulty accessing appropriate care in multiple hospitals around the globe.

This work is being done because of those gaps. The goal is to help improve how systems respond, so people are recognized earlier, supported more effectively, and able to access coordinated care.

But we know that improving care requires more than academic or clinical expertise. It also requires listening to the people living with these conditions. This new Model of Care is being developed alongside the community. Lived experience is essential in understanding where care is falling short, what barriers people face, and what needs to change.

That is why we are hosting a series of Listening Labs this June, which are structured virtual sessions where people living with EDS and HSD can share experiences of navigating healthcare systems.

These discussions will help shape the Model of Care, so it reflects real-world needs as well as evidence and clinical knowledge. Learn more about the Listening Labs here.

If you’ve had a negative experience with a specific healthcare system, we encourage you to raise your concerns directly with that institution so they can review and address them appropriately.

This work requires expertise in health system design and policy, primary care delivery, community engagement and translating guidelines into sustained practice at scale.

The collaboration brings that expertise together with community insight, clinical knowledge and health systems expertise so the resulting Model of Care is grounded in real-world context and can be applied across countries.

The intention is to change systems, not reinforce the challenges people experience today.

This project is focused on longer-term system change.

It will not immediately change access to services or availability of specialists. The goal is to develop a Model of Care that can improve care pathways, inform policy, and support implementation over time.

This research program is developing an evidence-informed, new Model of Care for EDS and HSD.

The Model of Care will describe how healthcare services should be organized, delivered, and coordinated across the system in practice, from first contact through diagnosis, treatment, and ongoing support.

It will set out how care is structured, including:

• The role of primary care and when specialist services are involved
• How care is coordinated across providers and settings
• How decisions are made about assessment, referral, and management
• How people are supported over time, especially for long-term or complex needs
• The system-level enablers required to support consistent care delivery

This is an early-stage design project focused on defining how care should function across a health system, rather than delivering services directly or directing where individuals should seek care.

Lived experience is a core part of this work.

We are gathering input through Listening Labs, community engagement, and ongoing feedback opportunities. These insights will directly inform how the Model of Care is designed.

This is a co-design process, shaped alongside the community.

The first phase focuses on these countries to gather detailed, system-specific insights.

This allows the Model of Care to be developed in a structured way across different healthcare systems. Further opportunities to contribute from additional regions will follow.

Yes.

You can share your feedback by contacting the Model of Care program lead through our Contact Us form.

We will continue to create opportunities for broader global input as the research program develops.

Yes.

All sessions will be recorded. Anyone who registers will receive access to the recording. Registration will also be available for those who want to watch on demand.

Insights from the community will help:

• Identify gaps in current care
• Define priorities for improvement
• Shape how care pathways should work in practice

This input will directly inform the development of the Model of Care.

The Models of Care project listens to diverse voices to better inform frontline care teams across institutions and geographies. Your experience is important to us and this work. Specific health concerns should always be discussed with your care team and institution. The Ehlers-Danlos Society and this collaboration will not provide treatment, mediate between patients and care teams, or offer guidance on care plans.

For questions about this project or to share feedback, don’t hesitate to get in touch with the Model of Care program lead through our Contact Us form.

For questions or concerns about your individual care, please contact your healthcare provider directly. This project does not provide clinical care or medical advice.