I would like to inform you of our, new. EDS support group for those living in Columbia, MO and the surrounding areas. We are, virtually, in between Kansas City and St. Louis, MO, with each of these cities being approximately 126 miles away from us. We have an active Private Facebook Page where we can get together and chat or post about EDS or anything else on our minds. The address for this site is https://www.facebook.com/groups/304976639869809/ and any individual will be accepted into the support group whether they live in the area or not. We are working on building a large enough group so we can schedule monthly, in person, meetings and activities for area members. We use the acronym COMOEDS, however, our Facebook profile is listed under Columbia Missouri EDS Awareness Support Group.
We are here to assist individuals who are dealing with any type or types of EDS physically and emotionally. We do offer physician referrals, suggestions for dealing with different symptoms, and other pertinent information for those who suffer with EDS and the chronic pain which can be associated with many of the different types. Most members of the group do quite a bit of research on a regular basis so we can be as up to date as possible on each type of EDS. Being affiliated with Chronic Pain Partners allows us to offer membership to this group and links to informative webinars held by diverse physicians and other specialists regarding EDS, as well as reading materials, different types of support devices offered through chronic pain partners, and the ability for people to become part of a community where they have numerous cohorts to communicate with. We are not a strict group expecting everyone to think, post, chat, or stay on the topic of EDS—we will discuss anything anyone feels is of import in their lives. Therefore, I guess we can be considered or described as a support group as well as a social group. We would appreciate being added to your listings of support groups for the state of Missouri.
Greater Kansas City
The Ehlers-Danlos Support Group of Greater Kansas City meets every other month on the third Saturday at 3:00 pm at 6608 Raytown Road, Raytown, MO 64133.
We welcome any and all with EDS or other connective tissue disorders as well as the families and friends of those affected. The group offers support to each other through sharing and caring. In addition, we hope to increase the knowledge of EDS within our own lives as well as in the surrounding community. If you would like more information, please contact EDSKansasCity@gmail.com.
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 email@example.com or join us on Facebook at https://www.facebook.com/groups/EDSofSpringfieldMO/.
If you have and EDS support group or charity you to add to this list, please complete the Support Group Listing Request form.