WORLDWIDE SCREENING EVENTS
- Participants will be invited to the screening events based on their information in the EDS Global Registry.
- After providing informed consent, accepted participants will have their blood drawn for whole genome sequencing. Family members will not be automatically included in the study, so each family member must individually go through the recruitment process.
- Recruitment will continue through 2020. Additional screenings may be scheduled at various clinics worldwide with carefully selected clinicians.
SCHEDULED RECRUITMENT EVENTS
New York City / January 10, 2020
Balance Arts Center, 151 W 30th St 3rd Floor New York, NY (Google Map)
London (UK) / February 22-23, 2020 / Location TBD
Ghent (Belgium) / February 29, 2020 / Location TBD
Paris (France) / March 22, 2020 / Location TBD
Israel / April 20, 2020 / Location TBD
Phoenix AZ (USA) / July 9-11, 2020 / Location TBD
Steps to take part in HEDGE
- Sign up for Global Registry here and complete all questionnaires
- You must meet the 2017 criteria for hypermobile EDS upon interview and examination by one of our participating physicians.
- You may allow a family member to complete the registry on your behalf.
- You must be at least 16 years old.
- Sign up for upcoming HEDGE event and indicate which event you would like to attend, please see list above
- If you have any additional questions please see our FAQs here.
- Please do not attend any event unless you have been sent a confirmed appointment slot.