EDSers United




Below are the details for the Virtual Video Meetings via Zoom.

When: Every 4th Sunday of the Month

TIme: 01:00 PM ET - 2:00 PM ET

Subscribe to Participate: https://form.jotform.com/223527978189070

We are no longer publicly publishing our Zoom meeting link to protect the group from being hacked by disturbed players during a meeting.

2023 Schedule

- May 28, 2023

- June 25, 2023

- July 23, 2023

- August 27, 2023

- Sept. 24, 2023

- October 22, 2023

- Nov. 26, 2023

- Dec. 24, 2023

Copyright 2010-2023. EDSers United. All Rights Reserved.

General Information

  • 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. 

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. 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 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 no longer being shared publicly. However, you can receive a calendar invite to a Zoom 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!

Living Rare Community Support Program