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.
Inland Northwest Ehlers-Danlos Support Group
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: www.facebook.com/groups/555958577887799/
It’s the best way to stay in the loop!
Once you go to the page, please click “request to join group”, then follow this link to take our entrance survey 😊
You will be asked basic information, as we want to keep our group a safe space.
Once we see your request and survey, we will add you right away!
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 with EDS!
We will be hosting regular meetings in the Spokane area, Tri Cities area, and Seattle-Tacoma 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 email@example.com or www.chronicpainpartners.com/inland-northwest-eds-support-group/!
WAEDS is open to current adult residents of Washington state with a FORMAL diagnosis of hypermobility spectrum disorder (HSD, or JHS) or Ehlers Danlos syndrome (EDS), and any local support people of the above (parents of children with the condition are welcomed).
Although the group is focused on medical and awareness issues related to hypermobility and cEDS/ hEDS, other forms of EDS are welcomed to joint if hypermobility is of concern.
Admissions are done roughly weekly, so look out for our screening questions. Once accepted, you will be invited to introduce yourself and to read our pinned post which will explain all of the group’s resources. If you do not have a formal diagnosis and are looking for help, we will offer you direction. Please be open to messaging or you cannot be screened in or helped.
The goal of this group is medical information and awareness activities. We maintain a preferred provider List and appreciate if you offer us the names and contact information of any helpful providers you have in Washington state. We do not vet these providers, but we do keep track of their positive and negative reviews as they are made available.
For venting and pure emotional support, please consider joining EDS – Some Days I Hate Life or Ehlers Danlos – We Zebras Need Zebras, or any of the other EDS or chronic pain sites on Facebook.
We do NOT deal with medical crises or urgent triaging: please call 911 or your providers for that help, and those emergency posts will be deleted. We are all different, so advice is based on experience, not on your exam or particular situation or insurance. Please use all shared information with that in mind and refer to your providers for personalized appropriate care always. We are not medically or legally responsible for the recommendations posted on this page. Always be mindful that posting medications and doses could be potentially unsafe: hackers can easily track you through Facebook and find your personal information and your home if they want to.
We will sometimes post surveys, supplies, or other things from groups or organizations, but only once from any one source/ occasion. We will post educational links, and we have files with the EDS societies and prominent literature. We provide links to other medically related Facebook groups. Please use your own discretion when posting and visiting links: they are for informational purposes only.
Posts and links should be related to hypermobility and EDS only, since there are many other venues for general posts, cartoons & photos, and other medical conditions, thank you. Off topic posts will be deleted without warning.
Bashing doctors, providers, or other members is not accepted. Foul language is not accepted. Any inappropriate post as described above will be deleted without warning. Repeat offenders will be asked to leave the group.
Blocking any administrator will automatically mean you are deleted from this group.
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.