In Response to Pandemic, Ehlers-Danlos Society Offers More Virtual Support Groups

Because many members of the Ehlers-Danlos syndrome (EDS) community are overwhelmed and at home during the global COVID-19 pandemic, the Ehlers-Danlos Society is offering additional virtual support meetings, as it did in March.

The free hour-long online events are opportunities for patients, their families, and caregivers to communicate with each other and ED Society team members. The sessions are in addition to the organization’s regularly scheduled virtual support groups, patient webinars, and its Helpline.

“Each event will be a chance to talk through your questions, speak with others for support, and address practical challenges that are arising,” the ED Society states on its website.

The ED Society held several similar virtual events during March, and is now extending these virtual support groups into April.

Sessions will be run on the Zoom video conferencing platform. Each event is limited to 100 individuals, on a first-come, first-served basis.

Following is a list of upcoming meetings. The times are for the U.S. and Canada unless otherwise indicated. (Use this converter to find the meetings in other time zones.)

• April 9, 12 p.m. EDT, 5 p.m. BST (British Summer Time)
• April 14, 7 p.m. EDT, 12 a.m. BST, 10 a.m. AEDT (April 15, Australia)
• April 16, 12 p.m. EDT, 5 p.m. BST
• April 20, 12 p.m. EDT, 5 p.m. BST
• April 21, 7 p.m. EDT, 12 a.m. BST, 10 a.m. AEDT (April 22, Australia)
• April 23, 12 p.m. EDT, 5 p.m. BST
• April 26, 7 p.m. EDT, 12 a.m. BST, 10 a.m. AEDT (April 27, Australia)
• April 29, 12 p.m. EDT, 5 p.m. BST

Usually, there is no need to download Zoom; the meetings should open automatically after clicking on the event link. Participants will be prompted by their devices to “allow” equipment camera and audio. Visit this site for more information about Zoom and how it works.

“It may seem like a daunting time, and it is important to look after our emotional and mental health,” the Ehlers-Danlos Society states.

The organization will keep updating its webpage on COVID-19 as the situation develops, in accordance with recommendations from the World Health Organization, the Centers for Disease Control and Prevention, and other official sources.

The Ehlers-Danlos Society also has a webpage with information about risk factors for COVID-19, and general advice about how to reduce the risk of exposure to the virus.

For more information about the COVID-19 pandemic and EDS, visit our page.