Published: 11/11/2025 Tags: The Ehlers-Danlos Society News

The Future of EDS and HSD

The Road to 2026 is a global collaboration led by the International Consortium on the Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD). The project focuses on updating the 2017 International Classification and diagnostic criteria to advance global understanding, diagnosis, and care for people with EDS and HSD worldwide.

This work brings together scientific research, clinical experience, and community insight to ensure that future classification and care pathways reflect both evidence and lived experience.

During the 2025 International Scientific Symposium, the Road to 2026 Committee shared progress and discussed how findings from ongoing studies are shaping the next phase of work.

The committee continues to develop updated classification criteria, diagnostic pathways, and management guidance. Results and recommendations will be published in December 2026 and early 2027, supporting progress toward greater global clarity and consistency in the understanding and care of EDS and HSD.

Scroll to learn more about the Road to 2026!

Slide titled ‘What is the Road to 2026’. Text reads: ‘A global project led by the International Consortium on EDS and HSD to update the 2017 International Classification.’ On the right, a large green arrow encircles text labeled ‘Goal: To produce an updated diagnostic criteria and pathways that improve understanding, diagnosis, and care for people with EDS and HSD worldwide.’ The background features white and teal curved design elements.
Slide titled ‘Examining What We Know — And What’s Next’. Text reads: ‘The Road to 2026 involves a thorough examination of what is currently known about EDS and HSD and what is needed to improve global access to diagnosis and care.’ On the right side, there is a circular green arrow surrounding a blue globe with outward-pointing arrows, symbolizing global outreach. The background includes white and teal curved design elements.
Slide titled ‘Driven by Research’. Text reads: ‘The Road to 2026 Committee’s work draws on a comprehensive review of current evidence and insights from key ongoing studies, including:’ followed by three bullet points: ‘What is EDS? Delphi Study – gathering expert perspectives.’ ‘Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study – exploring genetic factors.’ ‘hEDS/HSD Criteria Review Study – refining clinical assessments.’ Each point has a small blue and teal icon beside it representing collaboration, genetics, and research respectively. The background features white and teal curved design elements.
Slide titled ‘Lived Experience at the Center’. Text reads: ‘Lived experience is central to the Road to 2026. Community feedback has been gathered through two surveys:’ followed by two bullet points: ‘Your Voice Matters (April 2024) – capturing community questions, hopes, and concerns about the Road to 2026.’ ‘2025 EDS & HSD Community Experience Survey (May 2025) – exploring how EDS and HSD affect daily life, access to care, and healthcare experiences.’ Icons beside each survey show speech bubbles and hands holding a heart. The background features white and teal curved design elements.
Slide titled ‘Key Questions Guiding the Work’. Text lists four questions: ‘How do hEDS and HSD relate to each other and to other types of EDS?’ ‘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?’ On the right side are large teal and blue question mark icons. The background features white and teal curved design elements.
Slide titled ‘The Road to 2026: What’s Ahead’. Text reads: ‘The committee continues to refine updated classification criteria, diagnostic pathways, and management guidance. Findings will be published in the American Journal of Medical Genetics in December 2026 and early 2027, marking an important step toward greater clarity and consistency in the understanding and care of EDS and HSD.’ On the right side, there is an icon showing a document and a globe inside a circular green arrow. The background features white, teal, and blue curved design elements.

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