Illinois 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.

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Central Illinois EDS Support Group

We are here for those affected by Ehlers-Danlos syndromes in our area. We are based out of our capital city of Springfield and have members spanning the Central Illinois area as well as a few from our surrounding northern and southern areas. We were established in 2012 after seeing a need for support in our region. You can visit our group website on Facebook at www.facebook.com/groups/CentralIllinoisEDSSupport. For questions by email, write llyons12665@gmail.com. We have occasional casual support group get-togethers to have an opportunity to meet others who understand life with EDS. We look forward to what the future has in store for EDS awareness and support for those in our area.

Champaign Urbana Ehlers Danlos Support Group (CUEDS)

Meetings: First Saturday of the month from 1–3 pm at Carle Hospital, the main building (Urbana). The meeting will be held in Classroom B in the back of cafeteria on the basement level.

Contact: Deborah Royce, dlr4951@gmail.com

Visit the Champaign-Urbana EDS Support Facebook group

Park in the Carle Garage opposite the Main Lobby doors.

Chicago

EDS Chicago Support and Awareness is an in-person group that seeks and shares knowledge and techniques to manage Ehlers-Danlos syndromes. The group is open to patients with EDS, their doctors, therapists, and caregivers. All ages, races, genders, and religions are welcome. We are no longer “hiding” in plain sight!

The group meets on the first Saturday of the month from 11 am to 1 pm at 65 E. Huron Street, Chicago.

Meeting details and the organizer team can be found on our Meetup page and through the Chicago EDS Support Facebook Group.

Contact: Maria Pollock at mariapollock67@gmail.com.

Public Transportation: Red line, exit at Chicago Avenue, then south two blocks to the corner of Wabash and Huron.

Parking Garages: 50 E. Ohio, and 33 W. Ontario

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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 qczebratalk@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.