New York Support Groups and Charities

Central New York

CNY EDSers is a support group for people in the Central New York area who are affected by EDS or other disorders of hypermobility. Family members as well as EDSers are welcome. We meet a few times a year, at various locations. We also have a closed group on Facebook to support one another and to share information and experiences between meetings. Meeting dates and location are sent out to all who request to be added to our e-mail list and are posted on our Facebook page. Anyone interested in joining CNY EDSers is welcome to e-mail and/or request to join our Facebook page.

Long Island

To reach the Long Island support group, contact Vanessa Balter at or visit their website at

New York City

To learn more about EDS-NYC, contact Kurt Ostergaard at, or visit the website at We hold meetings, usually monthly, frequently with a speaker. Past speakers have included Dr. Jessica Davis, MD, Chief, Division of Genetics at Weill Cornell Medical College, and Dr. Anne Maitland, MD, PhD Allergist Immunologist. We offer a list of recommended doctors on our website and are adding new features to the site to promote activity. We normally hold meetings at the 92nd St. Y on Lexington Ave.

If you have and EDS support group or charity you to add to this list, please complete the Support Group Listing Request form.