| Local Support Groups |
|
This is a listing of local support groups who have chosen to have a presence here. These support groups are independent of EDNF and are managed and run by local volunteers. To have your group listed here (or to change listed information), please send basic information—name of the group, location, and any constant information including a way of finding meetings or group organizers—to
This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
or
This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
. Thank you.
For additional local support group information, including help on how to start one in your town, please contact Shani Weber, Local Groups and Outreach Liaison, at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it or EDNF itself at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it . CaliforniaSan DiegoLocal Group of Greater San Diego has meetings on the second Sunday of every month at 1 p.m. at the Cushman Wellness Center, Sharp Memorial Outpatient Pavilion, 3075 Health Center Drive, San Diego. Meetings are held on the first floor. Parking is available at the garage right next to the Outpatient Pavilion for $3 or free with a handicapped card. Parking can usually be found on Health Center Drive with a short walk to the Pavilion. Our goal is to support each other and share our knowledge and experience with EDS. We also provide education to medical professionals and awareness activities in the community. Everyone is welcome including those diagnosed with EDS or Joint Hypermobility Syndrome or anyone who suspects they have EDS, as well as family, friends, and children. Contact Terri at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it for more information. MassachusettsEDS 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 This e-mail address is being protected from spam bots, you need JavaScript enabled to view it for more information on the group or if you would like to join. MissouriGreater Kansas CityThe Ehlers-Danlos Support Group of Greater Kansas City meets every other month on the third Saturday at 3:00 pm at 6608 Raytown Road, Raytown MO 64133. We welcome any and all with EDS or other connective tissue disorders as well as the families and friends of those affected. The group offers support to each other through sharing and caring. In addition, we hope to increase the knowledge of EDS within our own lives as well as in the surrounding community. If you would like more information, please contact This e-mail address is being protected from spam bots, you need JavaScript enabled to view it . OregonSalem/PortlandOregon Area Ehlers-Danlos Syndrome Support: http://oreds.org/ for more information, or email This e-mail address is being protected from spam bots, you need JavaScript enabled to view it . The group is also on Twitter @OREDSORG. TexasHoustonEDS Houston Group meets the third Saturday of each month at the Stella Link Branch Library. For more information about meetings and to contact those involved, join or visit the EDS Houston Facebook open group. |