Thank you for being part of the London HEDGE screening

Posted June 6, 2019

The Ehlers-Danlos Society would like to say a big thank you to Professor Qasim Aziz and all of the team at The Wingate Institute who have helped us last weekend bring to London the HEDGE genetic study, devoted to finding the underlying genetic markers for hypermobile EDS (hEDS).

“It’s so incredible being part of such groundbreaking research,” stated Lara Bloom, International Executive Director of The Ehlers-Danlos Society. “The fact that people came here today from all parts of Europe is testament to that. Thank you so much to everyone who is making this happen: from all the staff at The Ehlers-Danlos Society, to our generous, kind, and committed donors, and all the researchers and clinicians dedicating their time to paving the future for us all.”

The next HEDGE screening will be held in Baltimore, Maryland, on June 15th and 16th. Interested participants must be diagnosed with hypermobile EDS, complete the Ehlers-Danlos and Related Disorders Global Registry, the HEDGE study participant application, and agree to provide a blood sample during the recruitment event. Strong preference will be given to applicants who upload a letter from their physician confirming their hEDS diagnosis according to the 2017 criteria and/or the hEDS diagnostic checklist completed by their doctor.

We will be recruiting for further participants over the next year for the HEDGE study; please make sure you are on the Global Registry, so you can be invited if you meet the research criteria.

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