Oregon 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.

Central Oregon EDS and Hypermobility Support Group

We have official meetings every couple months, with short informational lectures given by our local geneticist Dr. Osvaldo Schirripa on subjects that relate to EDS and its comorbidities.

We try to have social meetings every month (depending on weather and holidays) in the Central Oregon area. For more information please contact Karina Rufener at karina@studiokmadras.com.

Inland Northwest EDS Support

We are an EDS Support group based out of Spokane, WA. We welcome people specifically from Washington, Idaho, Montana, and Oregon! We are happy to accept people both with formal diagnosis or suspected Ehlers Danlos, as well as those who care for a Zebra (parents, spouses, etc). You can find us on Facebook here: https://www.facebook.com/groups/555958577887799/. It’s the best way to stay in the loop!

After applying, you will receive a message from an admin confirming your request to join the group, so make sure to check your “other” folder in your Facebook messages. You will be asked basic information, as we want to keep our group a safe space. We respect that we are all differently abled and may not be able to get to meetings, but while we are based online, we are primarily a place to meet others in your area in person. If you are under 18 and do not feel comfortable disclosing certain information, that is ok, you can be more general. This is a private group, meaning only members can see posts and you must be approved to join the group. We will be hosting regular meetings in the Spokane area and you are all encouraged to attend! We will also be doing awareness activities, and having open discussion. We are NOT medical professionals, and can only give advice from personal experience, so please speak to your health care providers about concerns as well. Please feel free to contact an admin with any questions or concerns at inw.eds@gmail.com or http://www.chronicpainpartners.com/inland-northwest-eds-support-group/! WELCOME to the INW EDS SUPPORT GROUP!


Oregon Area Ehlers-Danlos Society Support Group holds in-person meetings that vary from support style discussion to educational speaker with discussion and occasional social events. For more information, visit www.oreds.org/ or email info@oreds.org.

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.