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.
EDS New England/Massachusetts Support Group meets quarterly (every three months) on Sundays for a minimum of three hours at Children’s Hospital Boston-Waltham, 9 Hope Avenue, Waltham, Massachusetts, in the Deveber Conference Room. Parking is free.
Our group is comprised of individuals and families with young children, teens, young adults and parents who are affected by Ehlers-Danlos or a related connective tissue disorder (either personally or as a parent of an affected child). We are committed to supporting one another in every facet of our work, whether it be through our quarterly support meetings/presentations, interim awareness meetings/sessions, ongoing awareness initiatives such as our “EDS Physician Awareness Committee”, or through a variety of online communications, over the phone discussions or simply by texting one another. Feel free to contact Jon Rodis at firstname.lastname@example.org for more information on the group or if you would like to join.
Central MA EDS Support Group
Our group consists of a wide range of ages, from young children to adults. We meet in Millbury, MA (currently this may change) once a month on average for about 2 hours. Besides our monthly meetings, we have an active support group on Facebook, where members can share stories, questions, “hacks”, etc, and can receive support for these posts. Information regarding EDS and its co-morbidities are shared on the Facebook group as well. Please feel free to contact Niki Dupuis or Erica Crosby at email@example.com for more information regarding meetings and joining our group!
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.