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.
To learn more about the Zebra Group, contact Donna Acosta at email@example.com. We are a group of EDSers that support and help each other and share EDS info with each other. We are a little EDS family who would love to grow with more members! We have monthly meetings just outside of Los Angeles.
San Diego EDS Support Group has bimonthly meetings. We provide support between meetings via internet and phone with occasional one on one Support as needed for those who can’t make our scheduled meeting times.
We also provide access to a member compiled list of EDS=familiar physicians and specialists in our area to aid in finding quality care for our community members. We focus on raising awareness and keeping everyone connected with the most up to date EDS diagnosis guidelines and helpful resources. We strive to have our attendees feel comfortable and supported so everyone knows they’re welcome not only when Support is needed but also when things are going well.
For more information, email firstname.lastname@example.org.
Stay Bendy Stay Strong
San Fernando Valley
The San Fernando Valley Zebras is a Support Group for people with Ehlers-Danlos syndromes in the San Fernando Valley area of Los Angeles, CA. We gather online and in person (roughly once a month) to support one another. Please contact Elana Simon at ElanaLSimon@gmail.com with any questions, comments, concerns, suggestions.
Click here to participate in the SFV Zebra Member Survey.
Click here to find our Facebook Group.
“805 Ehlers-Danlos Support” is an online support group that meets once a month in Ventura, California. We welcome adults, teens, caregivers, and support people. We also welcome people with Marfan, Chiari, POTS, dysautonomia, IH, or any other comorbidity of the Ehlers-Danlos syndromes. Check us out on Facebook. We suggest sending a PM to be approved into the group, or contact Dena Piquette-Garcia at 805-607-4616.
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.