How Can You Get Involved? Your Voice Matters!

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. 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. 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.

What is EDS?

The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue. Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility.

What is HSD?

Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Other problems such as fatigue, headaches, GI problems, and autonomic dysfunction are often seen as part of HSD.

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