About the NJ Rare Disease Community Support Program

Prior to the global pandemic, EDSers United hosted the Community Support Program, every FOURTH Sunday of each month at the RWJ Health & Wellness Center located in New Brunswick, NJ. In 2023, each support group meeting took place virtually via Zoom. As of 2024, the monthly meetings are no longer being held and instead, quarterly virtual meetings will now be scheduled to match the demand for community-based connection and information. We encourage everyone to check this page to stay up-to-date on the details of each upcoming meeting. 

Meetings are open to anyone living with a chronically debilitating rare disease, and/or caring for someone with a chronically debilitating rare disease. 

The majority of people who join are individuals with rare connective tissue disorders like Ehlers-Danlos Syndrome, Marfan Syndrome, and Loeys Dietz Syndrome.

To protect the group from attempted hacks and disruptions, the Zoom link is not shared publicly. However, you can receive a calendar invite to a scheduled meeting by texting your first name and email to 201-702-4075. 

All are welcome and encouraged to attend. We look forward to seeing you!

General Information for 2024 Events​

• Please arrive on time. All meetings begin at 1:00 PM ET. You may also text your email to 201-702-4075 to be added to the calendar invite list for this support group.