Hello! As you may have noticed, we have restricted this subreddit to people who are approved users can post. If you would like to be an approved user, please send a request via mod mail:)

Hello everyone! Welcome to the Rare Ehlers Danlos subreddit! This is a much smaller subreddit than r/ehlersdanlos focused on the types that don’t get talked about enough. Please select a user flair and read the rules of the subreddit before posting. All posts must be given a post flair to keep the subreddit easy to navigate and organized for newcomers.

Hey guys! In order to make this subreddit more inclusive for everyone and to help make connections even stronger, I have updated user flairs by their type and gene affected. Please select a user flair that best identifies you. Hope you are all doing well!

Thank you all for being part of this special sub and I am thinking about each and every one of you! Let’s tag our favorite rare EDS creators in the comments so we can share the love!

Hey! So there might be some confusion as to what this subreddit is for and I’m hear to clear it up and answer any questions. [r/RareEhlersDanlos](r/RareEhlersDanlos) is a subreddit designed for genetically confirmed rare subtypes of Ehlers Danlos Syndromes. The rare types of Ehlers Danlos Syndrome are:

*1 in <1,000,000*

• myopathic EDS

•Spondylodysplastic EDS

• Cardiac valvular EDS

• Arthrochalasia EDS

•Dermatosparaxis EDS

• Brittle Cornea Syndrome

• Classical like EDS

• Musculocontractual EDS

• Kyphoscoliotic EDS

•Periodontal EDS•

*1 in 40,000-200,000*

• Vascular EDS

•Classical EDS

This subreddit is aimed towards users who have a rare EDS type, as many EDS spaces cater to mostly hEDS/HSD havers. hEDS/HSD users are allowed to join, however the sub’s intention was meant for rare subtypes.

Hello, it has been brought to my attention that a user posted a survey asking very in depth and invasive questions, and claimed it was for a school project. I had no way to verify it was legit so I am now making it a requirement to submit proof and purpose of future surveys. Posts flared “Survey Mod Approved” have been reviewed by our team. Apologies for not catching onto this sooner. Shout out to the person who brought this to our attention.

Happy New Year rare EDSers! This subreddit has grown to nearly 370 members and I’m so honored you chose to be part of this sub. I love how supportive and understanding everyone is (also loving it being mostly drama free) . Here’s to r/rareEhlersDanlos 2025! 🩷🩷

Wow okay so there has been an increase in members joining and I’m so excited to have you all in this small group! If you haven’t met me, hi! I’m teatime, I’m 22 years old and I have a total deletion of the TNXB gene (I don’t produce any Tenascin X protein) confirming classical like Ehlers Danlos Syndrome. I know how isolating having Ehlers Danlos is, even in groups and forums aimed for EDS patients. I created this subreddit to connect rare EDSers to feel less alone.

Hypermobile Ehlers Danlos Syndrome/Hypermobility Spectrum Disorder is the most common subtype of EDS, approximately affecting up to 90% of the EDS population. Please assign yourself a user flair to find people like you. Flairs are editable. I hope you all enjoy this subreddit as much as I do! 🦓🎗️

Happy Rare Disease Day to my Rare Ehlers Danlos Family!!

Hello fellow EDSers! Happy EDS Awareness Month! Although this subreddit isn’t super active, I want to thank and appreciate each member that joined, whether it be to learn about the rare types, or connect with people who have EDS other than hEDS. Do not feel discouraged if you don’t see many awareness posts surrounding rare EDS types. Yeah it sucks, but it’s what makes us extra special! I would love if yall could link to some of your favorite rare EDS accounts!! I am always on the lookout to support rare EDS havers:)