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.
The Rhode Island Ehlers Danlos Syndrome & CTD Awareness and Support group started in March 2013 and is run by its founder Krista Brack with administrators Ellen Smith and Virginia Law. We are a support group for those with all types of Ehlers Danlos Syndrome and related connective tissue disorders; their caregivers, family and friends. We focus much of our time raising awareness in our community about connective tissue disorders and supporting our members with up to date information, monthly in-person meetings, a Facebook support group, social activities, and yearly awareness events.
For more information, visit http://www.rieds.org/.
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.