EDSers United




We have made this decision out of an abundance of caution regarding the global pandemic, and to prioritize the health and safety of all attendees by CANCELING the IN-PERSON Community Support Group Meetings until it is safe to meet in person again and instead HOST VIRTUAL Meetings. Below are the details for the Virtual Video Meetings via Zoom.

When: Every 4th Sunday of the Month

01:00 PM ET - 3:00 PM ET
Join Zoom Meeting using Link: https://us02web.zoom.us/j/89640384118?pwd=ZjlRcTRheFJxa0x6TnFJSTVMWlNtdz09

Meeting Dates

- March 27, 2022 - ON SCHEDULE
- April 24, 2022
- May 22, 2022

- June 26, 2022

- July 24, 2022

- August 28, 2022

- September 25, 2022
- October 23, 2022
- November 27, 2022
- December 25, 2022  - CANCELLED

Meeting Contact Details

RSVP by texting 201-702-4075

Copyright 2010-2022. EDSers United. All Rights Reserved.

General Information

  • Please arrive on time. All meetings begin at 1:00 PM ET. If you are unable to attend after RSVPing, please cancel by texting 201-702-4075.  

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. Now each support group meeting takes place virtual via Zoom (link found above). We encourage everyone to check this page to stay up-to-date on the details of each month's meeting. 

This meeting is open to anyone living with a rare disease, and/or caring for someone with a rare disease. 

Come share your story, ask questions, and learn about how you can get involved in a safe space for people of all varieties with rare connective tissue disorders like Ehlers-Danlos Syndrome, Marfan Syndrome, Loeys Dietz Syndrome, etc.

No registration is required. However we do appreciate RSVPs via a quick txt to 201-702-4075. 

All are welcome and encouraged to attend.

We look forward to seeing you!

Living Rare Community Support Program