Florida Support Groups and Charities

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.

Jacksonville

Our mission is to support all individuals affected by Ehlers-Danlos Syndrome and related comorbidities in the Jacksonville, Florida area through education, community & outreach. We were established in 2018 after seeing a need for support in our area. We incorporated as a nonprofit with the State of Florida in 2019. We hold two virtual meetings per month and have a private Facebook discussion group where members can converse, access the member recommended provider list, and stay up to date on meetings. Learn more about our organization at www.edsjacksonville.org or via our Facebook group. The group is also open to those who live outside the region who come to Jacksonville for medical care. Meetings are held on the first Saturday of every month at 1pm and again on the last Sunday of the month at 6pm. Contact our group leader, Rachel Goodman at 904-703-1190 or via email at edsjacksonville@gmail.com for more information.

EDS Affiliate Logo

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.

EDS Affiliate Logo

Sarasota

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.




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.