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.
Hampton Roads Area
The EDS Hampton Roads Support Group provides information specific for our area; we meet monthly for fellowship and to discuss various topics related to our conditions. We are still a very small group so please join us and help us grow. You will find a list of recommended doctors for this area in the File section of the Facebook page. You can also contact us directly at email@example.com or ZebraAdvocate@gmail.com.
RVA EDS provides support more specific to the Richmond area, but welcomes & has members from many surrounding areas as well. RVA EDS meets in person quarterly (currently Jan/Apr/Jul/Oct) & socially in between. They also have an active Facebook group (https://www.facebook.com/groups/rvaeds) where you will find, in addition to conversation & support, a “Providers We Like” list. You can also find RVA EDS online at rvaeds.org or email them directly at firstname.lastname@example.org.
Virginia EDS/Chiari/Syringo/TC/IIH/POTS Support Group. We are a VA face to face monthly meet and greet, as well as on-line support and resource group. We are growing and now have six locations as opportunity to meet up with and form friendships during difficult times that tend to isolate us. The goal is to never be alone, to have friendships that develop as life long family. When that occurs that is a successful goal of the group, that has been met. In addition the education and awareness of our illness’s is imperative and is available in our files and members life experiences. We offer physician lists and medical professionals that assist us in forming our individual medical team. The on-line Support is strong, and far reaching.
This is a support group for you, and is “your” support group.
The six locations for meet and greets:
- West End Richmond
- Lexington coming in 2016
You can reach us on Facebook as we are a closed group, with responses to requests daily: https://www.facebook.com/groups/195011847266960/. Screening Is performed, for safety of group. Also reach us by email at Hyperinchrist@comcast.net.
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.