Needless to say it is very helpful to find any support system you can to deal with this lousy systemic life-altering and sometimes disabling condition, diagnosed or not, so I’m providing some of the best support group leads here:
(Yes, I’m based in the western US so am North American centric. I welcome links to other groups worldwide thanks.) Last Updated May 8, 2023
US Based Support Groups
The Ehlers-Danlos Society (formerly the EDNF in the US before 2016) has held virtual group meetings since 2020, and leads annual conferences worldwide (virtual and in person since 2020). They have gone virtual (so available worldwide) since COVID in 2020 thankfully. And now run hybrid conferences in 2022.
Chronic Pain Partners – aka Ehlers-Danlos Awareness, very supportive organization that will help you form a support group in the US or elsewhere if there are none nearby. They also offer many free educational webinars on all things related to EDS including MCAS. Note November 2022: John Ferman, founder, is under the weather at this time, and may not respond to emails for a bit. But hopefully later in time, or someone else will. Thanks for your patience.
Rare Disease Connect (Ehlers-Danlos Syndrome Page) – has leads to other groups all over the world. (Trouvez des autres groupes partout dans le monde ici. Encuentra otros grupos alrededor del mundo aquí. Finden Sie andere Gruppen auf der ganzen Welt hier. Найти другие группы во всем мире здесь. 在这里找到世界各地的其他团体。ここで世界中の他のグループを見つけてください。여기에서 전 세계의 다른 그룹을 찾아보세요. دنیا بھر میں دوسرے گروپس کو یہاں تلاش کریں۔)
Adult Genetics clinic at the Greater Baltimore Medical Center – Claire Francomano heads up an EDS clinic here now since 2017, but has a LONG waiting list accordingly. ETA: Dr. Francomano moved to Indiana in 2019 I believe. Unclear if the original Center for Excellence remains in Maryland. Updated info welcome thanks.
I heard rumor there was an EDS clinic in Utah but have no details and am hearing conflicting info. Please email if have current news: firstname.lastname@example.org thanks. (Sorry to get anyone’s hopes up if false.)
Dr. Osvaldo Schirripa specializes in diagnosing the EDS and HSDs in central Oregon
Dr. Diana Driscoll (patient and clinic director) runs POTS Care in TX (no affiliation, mixed reviews)
November 2022: I’m pretty sure there are a couple more I don’t have listed. Please apprise me of any other such Centers you know of TY! email@example.com
The International Ehlers-Danlos Society now (2019) also hosts several worldwide online virtual support meetings on the Zoom platform for different cross-sections of our community here now ( patients, parents and caregivers, men, rare types only, vEDS only, more): https://www.ehlers-danlos.com/virtual-support/
The Inspire Community (allows anonymity unlike Facebook, the EDS support forum started by the EDNF but has worldwide members going back years). That said, some people have found themselves censored or blocked by TEDS on this forum for not agreeing to everything they say.
Twitter – where I highly recommend following my stream of course, but also the hashtags #NEISvoid, for No End In Sight Void as well as #EDS Update November 2022: we are still there, despite the current chaos being generated since Elon Musk took over. How much longer remains to be seen, but I full intend to remain until the bitter end if one comes. After that, I may migrate to Instagram where there are other people and pages to follow already of course. Some are also already migrating to Mastodon, but I’m not versed in this yet, so will start with Insta first. And it’s also very possible a couple of Twitter “clones” may spring up in the next year or two, and slowly rival each other, until one emerges as the “keeper” (victor) in the market of ideas. NB, all tweets are public however, unlike posts in Facebook and MeWe private groups. But it’s a very “organic” and powerful platform for connecting and learning things. Especially if you’re autistic. (Check out #ActuallyAutistic there too.)
Instagram – I’m not on there yet (November 2022) but giving it the hairy eyeball (a closer look) now that Twitter is taking on water (getting chaotic and unsteady and people are leaving). However, many others are. I’m pretty sure you can just search for hashtags like #EDS and #EhlersDanlos there too, just like on Twitter to find people and organizations to follow. (I’m preparing to do a deep dive shortly, and probably join.) But again, all posts there are fully public, just like on Twitter.
A Word on Facebook Support Groups
There are many EDS support groups on Facebook besides the ones above, including others which are “closed” (membership list is visible to all on Facebook, but not what you post which is only visible to group members), and others that are “secret” (only visible by invitation only from Facebook friends, so quite “protected” and safe as long as all members are discreet with the information they are privy to).
You might also search for Facebook groups starting with the words “Ehlers-Danlos”, “Hypermobility” or “Hypermobility Syndrome” as well as for groups specific to your particular type of EDS if known. E.g. Vascular EDS, Classical EDS, etc. Or for your specific area or state. (E.g. “Oregon Area Ehlers-Danlos…”)
There are also Facebook groups for Chiari malformation support, Austistics and Mast Cell Activation Disorders as well as an official page managed by The Mast Cell Diseases Society. (Formerly known as The Mastocytosis Society prior to 2019.) Basically, there are groups on Facebook for just about any interest you could think of. (They are easy to start).
All groups have their own rules and screening questions to join, please respect them for the sake of the volunteer administrators, and please respect your fellow members privacy and do not share what you learn in any group anywhere else without their express permission.
Likewise, post accordingly – know that anything you post even in a “secret” group may end up getting shared inadvertenly or otherwise by a group member, so use your discretion. (We cannot control anyone else’s behavior or level of discretion, and not all are as mindful as others.)
ETA July 30, 2023: We’ve also been aware for over three years that if a group member in a private group uses the “invite members” tool from within that group, the person they invited bypasses all the group screening, to be allowed to “peek in” on the group to see if it’s something they want to join. This totally defeats the point of having a group be private with screening questions. We just delete these requests when we see them for this reason. But other groups may not.
Also, the invitees don’t’ always appreciate the invitation. So, it’s better to share a group’s URL with someone you think might be interested in a group, allowing them to “opt in” vs being “plopped in”. This also keeps the private group secure. But again, as above, never assume things are truly safe. Anywhere on the internet.
Not all members are “out” with their EDS diagnosis or condition, nor their autism, as they may be trying to maintain appearances to keep their jobs or school going, so please keep this in mind also.
Other Ways to Connect
I realize not all are on Facebook nor wish to be (I don’t blame you!), so there are several other ways you can connect anonymously or not via the internet including: