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.

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.




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.