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Join a Research Study

Shaping the Future of EDS Research


Now Enrolling

Participation in research is your chance to contribute to groundbreaking discoveries that can transform lives. Your input, whether through our surveys, clinical trials, or other research opportunities, can shape the development of new treatments and interventions.

Current Studies

EDS/HSD Clinical Manifestations Survey

Open worldwide to adults with a clinical diagnosis of HSD or EDS (any subtype)

If you are at least 18 years old and have a clinical diagnosis of Ehlers-Danlos syndrome (any subtype) or hypermobile spectrum disorder, you are invited to complete our online, anonymous survey.

This survey consists of questions pertaining demographics, medical history, and patient experience.


The aim of this study is to gain a better comprehensive clinical understanding of EDS and HSD to guide medicine and research in the future.


Please direct any questions regarding this survey to the study coordinator at

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hEDS Genetic Registry

Thank you so much for your interest in enrolling in our genetic registry!

Due to the high volume of participation, we have paused enrollment at this time. 

If you have previously enrolled, we thank you for your patience as we process the many submissions we have received. We are continuing to consent participants, and a clinical research coordinator will contact you if you are eligible to participate. 

For any additional questions, email us at

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