Iowa 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.

Cedar Falls/Waterloo EDS Group

The Cedar Falls/Waterloo group holds meets-ups for people in the area with EDS. These meet-ups are multiple times a year, but at this time are not every month. Please contact Jess at 319-242-2896 or for information on dates and times.

Cedar Rapids Ehlers-Danlos Support Group

The Cedar Rapids EDS Support Group connects those with EDS in Cedar Rapids and surrounding areas. This group is composed of members diagnosed over a decade ago, as well as people recently diagnosed, or currently seeking a diagnosis. Topic sessions and speakers are open to anyone who would like to learn more about EDS, including but not limited to doctors, caregivers, and friends of those with EDS. However, the last half hour of our meetings is reserved for those with EDS only. We ask that people without EDS leave for the final half hour of our meetings to allow privacy and confidentiality for those with EDS to openly discuss any issues they are having, and provide support to each other.

Topics discussed and guest speakers will be selected based on member needs. Current topics of interest are biofeedback/mindfulness therapy, workplace accommodations, lifestyle modifications, coping skills, local resources, and different types of medical doctors/treatments & what they can do for you.

Main meetings are typically held the 2nd Saturday of every month at the Cedar Rapids Public Library. However, meeting dates and conference room might change, so please confirm on our calendar before attending.

Cedar Rapids Public Library
450 Fifth Avenue SE
Cedar Rapids, IA 52401

(319) 214-5348

Des Moines Support Group

The Ehlers Danlos Syndrome Des Moines Support Group is intended for individuals with Ehlers-Danlos syndrome, caregivers, family, close friends, and providers. The group discusses relevant topics that expert speakers may address, resources for medical and alternative therapies, local support agencies, and healthy ways to cope. The group will also provide a safe place for members to meet and interact.

Meetings are currently held at Smoky Row, 1910 Cottage Grove Avenue, Des Moines, Iowa, the 4th Saturday of the month from 1:00-3:00 PM in the private meeting room. Please confirm meeting information on the calendar prior to attending. (dates, times, and locations may vary)


Iowa City

The Ehlers-Danlos Support Group of Iowa City welcomes 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

EDS Affiliate Logo

Iowa/Illinois EDS Quad Cities

We are a group that welcomes any and all with EDS or searching for EDS diagnosis as well as their family and caregivers. We offer support to each other through sharing and caring, building relationships to help each other along in our journeys. We also are hoping to bring awareness to our community and medical staff in the area to help in our treatment, and build a provider list for the group to have options and ideas of where to connect with knowledgeable providers.

We have a Facebook page EDS Quad Cities and please direct questions to

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.