New York Support Groups and Charities

It is important to note that The Ehlers-Danlos Society does not have any ownership or direct financial interest in any of the specific organizations or groups listed below. Groups listed below are in-person support groups and nonprofit organizations/charities. The Ehlers-Danlos Society does not guarantee or make any warranties, express or implied, as to the quality of advice or support given by any listed group or organization. The information listed in the results is based solely upon the data entered by the groups listed.

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 CNYEDSers@gmail.com and/or request to join our Facebook page.

Central New York

Teen EDSers of CNY s a group for anyone who suffers from EDS, is in the process of receiving a diagnosis, or knows someone who has it. The group is meant for it’s members to encourage and inspire each other. For more information email thechronicallymaddy@gmail.com.

Long Island

To reach the Long Island support group, email longislandeds@gmail.com or visit their website at longislandeds.com.

EDS Affiliate Logo

New York City

To learn more about EDS-NYC, contact Kurt Ostergaard at kurt@eds-nyc.com, or visit the website at www.EDS-NYC.com. 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.

Potsdam

Potsdam Fibromyalgia and Ehlers-Danlos Syndrome (F-EDS) Support Group is open to people with hypermobile EDS, fibromyalgia, postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS), which often co-exist and may be un- or misdiagnosed. Patients with all of these conditions struggle with many of the same problems: pain, fatigue, sleep disturbance, exercise intolerance, GI problems, anxiety, etc. The group strives to help people develop the tools to best manage their conditions. The group is supported by a collaboration between Clarkson University Physical Therapy Department and Canton-Potsdam Hospital.

For more information, visit https://webspace.clarkson.edu/~lrussek/pfsg.html.

Western NY (Buffalo, Niagara Falls, Rochester)

This support group for Western New York (including the Buffalo, Niagara Falls, and Rochester areas) was designed for those in the Western NY area to connect with others for both informational and emotional support. Our goal is to connect our families through a network of friendship that lasts a lifetime! We are connected with EDS Awareness/chronicpainpartners.

Find us on Facebook under the name “Ehlers Danlos Syndrome (EDS) Support group for Western NY / WNY / Buffalo”. Please make sure you answer the admission questions so that your request will be accepted.

Or contact us at WesternNYEDS@gmail.com.

We are also listed at EDSAwareness.com.




To add your EDS support group or charity, please complete the Support Group Listing Request form. To become an affiliate of the Society, please visit the Global Affiliation Program page.