Finding Support

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.)

US Based Support Groups

• The Ehlers-Danlos Society (formerly the EDNF in the US before 2016) has virtual group meetings since 2020, lead annual conferences worldwide (virtual and in person since 2020)
• 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.

Canadian EDS Support Groups

• EDS Canada (English and French)
• The ILC Foundation of Canada for Chronic Pain and EDS in children

Worldwide

• 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. Найти другие группы во всем мире здесь.)
• Rare Disease Connect – unspecified, worldwide – for connecting to support for any rare disease worldwide
• UNSED – Union Nationale des Syndromes d’Ehlers-Danlos (France)
• GERSED – Groupe d’Etude et de Recherche du Syndrome d’Ehlers-Danlos (France)
• SED Medic – informative site in France (en francais)
• Deutsche Ehlers-Danlos Initiative e.V. (German)
• Asociacion Nacional del Sindrome Ehlers-Danlos hiperlaxitude (ANSEDH) – Spain

EDS focused clinics around the US:

• 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.
• 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: info@ohtwist.com 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
• Please apprise me of any other such Centers you know of TY! info@ohtwist.com

Online Only

• 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)
• Open Facebook EDS Support Group (visible to anyone in the world, not anonymous, join and post accordingly. There are other closed groups too.)
• My private OhTWIST Facebook Support Group (please answer the three screening questions thoroughly thanks)
• My private OhTWIST MeWe Support Group (please answer the screening questions thoroughly here too thanks)
• 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

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 FB, but not what you post which is only visible to group members), and others that are “secret” (only visible by invitation only from FB 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 FB 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.

There are also Facebook groups for Chiari malformation support, Asperger’s and Austism Spectrum 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.)

Not all members are “out” with their EDS diagnosis or condition, 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:

• Meetup
• Craig’s List
• MeWe (I have a small but hardy group started up on here now too)

Please feel free to email other suggestions to me at info@ohtwist.com or via the contact form in the menu above thanks. Last updated 3/10/22.

• Books 
• Helpful Gadgets
• Support Groups
• EDS Resources
• MCAD Resources
• Mental Health Resources
• Dysautonomia Resources (POTS too)
• Autism Resources
• Related Research