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.
Our group location states Columbia, MO, however, we also extend membership to those who are just too far from some of the bigger cities. We have members from all over Missouri, however, most are within a hundred mile radius. Certainly, we do not discriminate–we welcome anyone who has an interest in EDS in all of its forms, as well as all of the other illnesses which tend to go along with having EDS.
We were founded in 2016 and we have monthly meetings in Columbia, MO, which every member of our group is welcome to attend (the meeting place is handicap accessible). We discuss everything EDS, however, we are not limited to this subject–we want members to feel free to vent or share from all areas/aspects of their lives. We do not judge and we have very few rules. The rules we do have are those which any human being should practice in their daily lives during any social activities they participate in. We seek members who want to learn more about EDS and the many other illnesses associated with having EDS, and those who may be able to teach the rest of us something new!
Our future goals include improving member participation and group cohesiveness. We also plan on adding other social activities as time, place, and weather permit. We strongly believe in advocacy as well as teaching self-advocacy. We are truly there for each other and anyone who joins our group will come to feel as comfortable with the members of the group as they do with their own family members. We are always finding new ways to implement learning/teaching activities and, of course, we do love to have fun too.
We are a very diverse group of individuals and we welcome everyone! To become a member of our group please go to https://www.facebook.com/groups/COMOEDS/ and click on the join button. You may also contact the administrator, Angela Ricketts, at firstname.lastname@example.org or by phone at (573) 356-5757 We look forward to welcoming all new members!
Greater Kansas City
A support and awareness group for Greater Kansas City and the surrounding areas for those who have been diagnosed or are seeking diagnosis for Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD) and their associated comorbidities including MCAD, dysautonomia, and POTS. Partners, friends and family are welcome and encouraged to attend. Our goal is to support each other and share our EDS/HSD knowledge and experiences in a safe and supportive environment. Areas of focus could include support group meetings, awareness activities, advocacy, education, social events, sharing resources, fundraising, and partnering with the medical community to improve EDS/HSD healthcare. For questions please email us at email@example.com.
Our support group meeting information can be found on our Facebook page at https://www.facebook.com/groups/edssupportgroupgreaterkc/
The Ehlers Danlos Syndrome Springfield, Missouri Support Group is currently a small herd of zebras with Ehlers-Danlos syndromes, similar connective tissue disorders, dysautonomia, and other comorbidities. Caregivers, family, close friends, and providers are welcome to attend. The group will provide a safe place for members to meet and interact. We share stories, offer support, ask questions, share hacks, and more. Our goals are to encourage growth, sharing and support among members, learn more about EDS and related conditions, and help others better understand EDS and our lives as zebras.
Questions? Please email us at firstname.lastname@example.org or join us on Facebook at https://www.facebook.com/groups/EDSofSpringfieldMO/.
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.