The Ehlers-Danlos Society launches its EDS & HSD Global Registry & Repository

Posted January 25, 2021

A globe image is shown with a background of a DNA strand. To the left, a person on a cell phone. To the right, a person joining online via a laptop. Text reads: Join the EDS & HSD Global Registry and Repository.

In order to continue to research for our future, we are delighted to announce our new EDS and HSD Global Registry and Repository. This platform, in partnership with LunaDNA, will allow the EDS and HSD community to take part in research.

The EDS and HSD Global Registry and Repository will help researchers throughout the world to advance understanding of the EDS, HSD, and related symptoms and conditions.

Each person who joins will help:

  • Map the experiences of those living with EDS and HSD, globally. 
  • Enable the gene search for hypermobile EDS (hEDS) and hypermobility spectrum disorders.
  • Facilitate research into the frequency of related symptoms and conditions, which may be associated with the various types of EDS and HSD.
  • Discover new forms of EDS or HSD.
  • Understand the relationships between EDS and HSD, and chronic pain, anxiety, and other problems such as neurological, mast cell, gastrointestinal, and autonomic disorders.

Participation is free to all, with global access available—no matter where you live—and more languages available soon. You can now join via a smartphone or desktop device! Learn more and join today. 

What if I have joined the registry before?

If you have previously been a member of the EDS & HSD Global Registry then you should have now received an email with a unique link inviting you to join the new platform. This link will allow us to link your old and new registry accounts, and to form a link between the data from the previous registry platform once the migration is complete. Please use this link to sign up rather than signing up as a new user. Signing up as a new user will not allow us to link the profiles from the previous registry to the new platform.

Please note data from the old registry will not be immediately visible on the LunaDNA registry. For more information please see our FAQs.

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