Participate in the EDS and HSD Biobank Research Study – May 4-8, 2026 | Los Angeles, California, USA

We invite you to learn more about an opportunity to participate in biobank research taking place in Los Angeles this May.

As part of The Ehlers-Danlos Society’s Global EDS and HSD Biobank, we are collecting biological samples and health information from individuals with different health backgrounds to support vital research into the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).

A Major Update Is Coming to EDS and HSD Diagnosis

For the first time since 2017, the diagnostic criteria for all types of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) will be updated. The new framework will be published on December 1, 2026, in the internationally renowned journal, the American Journal of Medical Genetics, a leading global publication for genetic and rare disease research. Once published, the new framework will replace any previously published diagnostic criteria for EDS and HSD.

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.