Florida Support Groups and Charities


EDS Florida is a group for Florida residents who have or believe they may have EDS as well as medical providers, family, and friends of EDSers. This group is for education, information, and awareness about Ehlers-danlos Syndrome and co-existing disorders such as Mast Cell Activation and Dysautonomia (POTS). Together we can bring awareness to the public and to the medical community one person at a time. Please join us if you live in Florida at: Ehlers-Danlos Syndrome Florida.

Northern Florida

The Northern Florida EDS support group is growing. Our goal is to offer support and share resources to those in the North Florida region. We meet occasionally and hope to have presentations on numerous topics in the near future. Join our Facebook page or email Lisa at auerl@bellsouth.net for additional information.


Gulf Coast Zebras is a friendly and supportive group! We invite EDS patients and their care givers to join us. We also invite “zebras” who have co-illnesses of EDS such as mast cell disorders and Dysautonomia/POTS. We meet the Second Saturday of every month at 11:00 am at the Panera Bread located at 5864 Bee Ridge Rd., Sarasota, FL 34233. Most days, the founders of the group, Sammi and Kavia, meet with the other teen members of the group at a separate table to provide each other camaraderie and support. Mindy and Halle, the mothers of the founders, typically meet with the adults (and their young EDS children) at another table. You can find our group easily as we display an image of a zebra on our table.

We send reminders for our meetings on the Facebook groups, Ehlers-Danlos Syndrome Florida, Florida Teens and Parents with POTS, CFS, and other Invisible Illnesses, and Gulf Coast Zebras. For more information, email gulfcoastzebras@gmail.com.

If you have and EDS support group or charity you to add to this list, please complete the Support Group Listing Request form.