Updated: June 25, 2020
The wellbeing of our community and health professionals is our utmost priority. Given the current situation with COVID-19 [Coronavirus], we have had to postpone or cancel some of our events. Please see the current events that have been affected, including information around registration and new dates if applicable.
Paris | The Ehlers-Danlos Society European Learning Conference
The Ehlers-Danlos Society has decided to postpone its European Learning Conference and HEDGE study screening in Paris, France, which was due to take place March 21–22, 2020. Registrations will automatically be carried over to the new date unless a refund is requested.
We have rescheduled both the conference and the HEDGE screening for November 7–8, 2020. November 7, 2020, will be health professionals day (in place of March 21) and November 8, 2020, will be community day for patients, their families, and caregivers (in place of March 22).
Child Protection in EDS and HSD Roundtable, April 27, 2020
This event has now been postponed until January 11, 2021. For full details click here.
HEDGE Study Screenings
It is with deep regret that The Ehlers-Danlos Society has had to make the difficult decision to cancel HEDGE screening events at the following locations:
Houston (Texas) / May 23-24, 2020
Frankfurt (Germany) / June 5, 2020
Toronto (Canada) / June 27, 2020
We will be announcing new dates and locations for the HEDGE screenings later in the year. Click here for HEDGE Study Frequently Asked Questions (FAQs).
The Ehlers-Danlos Society regrets to announce that we have taken the decision to postpone our Global Learning Conference and HEDGE study screening, due to take place on July 9-11, 2020, in Scottsdale, Arizona.
The conference will now take place on August 5-7, 2021.This will be the first time we have not had an in-person Global Learning Conference, and we will look to see if we can run more virtual options to still bring our community together at this time. Please continue to check our website here, and social media platforms, for updates on having parts of this conference online.
We have rescheduled the conference for August, 2021. August 5-7, 2021, will be our Community Days for those living with EDS and HSD, and their family and friends. August 6, 2021, will be our Health Professionals Day which will run in parallel for health professionals only.
At this time we do not know if a HEDGE screening will run during the conference in 2021 as it is hoped enrolment will be complete by this time, however this is impossible to say currently with the COVID-19 crisis. We will continue to update the community on further opportunities to take part. All registrations will be automatically carried over to the new 2021 conference dates unless a refund is requested. Full event information, any virtual event announcements, FAQs, and contact information can be found here.
Vascular EDS (vEDS) Family Summer Camp
The Ehlers-Danlos Society regrets to announce that we have taken the decision to postpone our vascular EDS (vEDS) family summer camp, due to take place on July 31 – August 2, 2020, in Cincinnati, Ohio, in conjunction with Camp Joy. The wellbeing of our participants and our community is our top priority and we are unable to allow this event to run as scheduled. The family weekend will now take place on July 30 – August 1, 2021.
If you have already registered your interest in attending the summer camp, there is no need to re-register for the new dates and your registered interest will be carried over for the new dates.
The Ehlers-Danlos Society has secured funding to enable a “pay what you can afford” program for the family weekend, and we still hope this will be the biggest gathering of the vEDS community in the world in 2021, with educational programs from world-leading vEDS specialists.
Classical Ehlers-Danlos syndrome (cEDS) conference
We were due to hold conference focusing on classical Ehlers-Danlos syndrome (cEDS), at Baylor Medical Center in Houston, September 19-20, 2020. This has now been postponed to November 13-14, 2021:
Saturday, November 13, 2021, is health professionals’ day.
Sunday, November 14, 2021, is a day for individuals with cEDS and their families.
There are currently no plans to cancel or postpone other events at this time, however, please keep checking this page for updates. The Ehlers-Danlos Society will be monitoring the COVID-19 situation, globally, to ensure the safety of our attendees.