The Road to 2026 will update the understanding, diagnosis, and management of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). This process is led by research and expert opinion, but lived experience must be part of the conversation.
The Ehlers-Danlos Society’s role in this process 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, including how to join, click here.
