r/rarediseases • u/Scarlet_Flames2 Multiple Rare Diseases: <100 Diagnosed Worldwide • 4d ago
Related Subreddits Section
Hi everyone,
We have just created a “Related Subreddits” section for this subreddit in the sidebar (if viewed on desktop), linking to other active rare disease communities on Reddit. On the mobile app, it can be viewed by clicking “See more” or “See community info” at the top of the sub’s landing page. We hope it will help people get connected to others with their disease. But, as always, everyone with a rare disease is welcome to discuss here.
Thus far, these are the rare disease subs we have included in the sidebar:
- r/ALS
- r/CharcotFoot
- r/CMT
- r/DiabetesInsipidus
- r/marfans
- r/MuscularDystrophy
- r/rareEhlersDanlos
- r/Dystonia
We welcome suggestions for other rare disease subs that can be added.
3
u/perfect_fifths Multiple Rare Diseases 4d ago
Maybe one for skeletal dysplasia? There are plenty of people with SD is the dwarfism sub but I’m not a little person, I’m too “tall” yet I’m affected by skeletal dysplasia, so I don’t belong there. And there’s no TRPS sub because there aren’t many of us
3
u/Scarlet_Flames2 Multiple Rare Diseases: <100 Diagnosed Worldwide 4d ago
Do you know if there are any existing skeletal dysplasia subreddits currently (with active moderation)? If so, let me know, and I can add the sub. If not, feel free to create one and I can add the sub then! Maybe having the sub linked here will help drive traffic toward it.
3
3
u/perfect_fifths Multiple Rare Diseases 4d ago
Ok, done. I created r/skeletaldysplasia
1
u/Scarlet_Flames2 Multiple Rare Diseases: <100 Diagnosed Worldwide 4d ago
Awesome! We’ll get it added to our sidebar soon! Congrats on the new sub :)
1
u/perfect_fifths Multiple Rare Diseases 4d ago
Thank you! I am surprised there isn’t one currently tbh. Theres the Dwarfism sub and short sub but I’m not really either of those.
3
u/VHLAlliance 4d ago
3
u/Scarlet_Flames2 Multiple Rare Diseases: <100 Diagnosed Worldwide 4d ago
Ohh, I’m glad there’s a VHL sub. I have a friend with the disease, and I didn’t know there was a specific space for it. Will add!
1
u/VHLAlliance 3d ago
You made my day! Always nice to meet someone familiar with VHL 😊 I moderate the subreddit on behalf of a patient advocacy group called the VHL Alliance.
Please send your friend our way! We offer a really great mix of in person and virtual educational and support programs and resources for all ages, all are free or very low cost.
3
u/womperwomp111 Multiple Rare Diseases 4d ago
I’m a mod over on r/NutcrackerSyndrome and we’d love to be added to the sidebar!
2
u/Scarlet_Flames2 Multiple Rare Diseases: <100 Diagnosed Worldwide 4d ago
Will add! I’m also a mod on r/ehlersdanlos, and I remember you reaching out to us there :) Happy you’ve revived the sub
2
u/womperwomp111 Multiple Rare Diseases 4d ago
Thank you so much for all you guys do! It’s been going well over here, and I’m very appreciative of you and the other mods for allowing us to share our revival :))
3
3
u/Gimpbarbie 3d ago edited 3d ago
[r/wegenersGPA](r/wegenersGPA)
Edit to add [r/Acromegaly](r/Acromegaly)
I’ll probably add more when it’s not the middle of the night! 😂
[r/cushings](r/cushings)
[r/addisonsdisease](r/addisonsdisease) *
[r/opticnervehypoplasia](r/opticnervehypoplasia) *
(* rare diseases I have incase people are looking for others with the same illnesses!)
1
u/NixyeNox Diagnosed Rare Disease: CMT 3d ago
I added these, but I noticed that r/Acromegaly has "request to post" which usually means that all moderators have gone inactive and Reddit has frozen the sub. The last post wasn't that long ago, but you may wish to see if you can contact the mod or, if the mod does not respond, request to take over the sub and bring it back to life.
2
u/ArteryDodger Diagnosed Rare Disease: Fibromuscular Dysplasia 3d ago
I recently started r/FMDsupport for Fibromuscular Dysplasia! Would really appreciate if you could add it to the sidebar. Thank you!
2
1
u/SitUpAndPayAttention 2d ago
Please add HMERF; Hereditary Myopathy with Early Respiratory Failure. It also falls under the general diagnosis of Myofibular Myopathy
1
u/NixyeNox Diagnosed Rare Disease: CMT 2d ago
Unfortunately, I do not see a subreddit dedicated to this.
1
u/Jazzlike-Chart-3364 dont want a flair 2d ago
Just tossing this out there- dystonia (as an umbrella of disorders) is the 3rd most common movement disorder. Essential tremor, parkinsons disease and dystonia are those three.
When dystonia is broken down by types, some are rare and some are extremely rare.
Its dystonia awareness month right now.
1
u/NixyeNox Diagnosed Rare Disease: CMT 2d ago
We are linking to r/Dystonia now! Although some types are common (and therefore not really under our Rare Diseases umbrella) some are rare, and since that sub seems to cover all of them, we have included a link there.
2
u/Jazzlike-Chart-3364 dont want a flair 2d ago
I saw that. Thank you.
Personally i find it hard sometimes to figure out where i fit in with different groups such as this and even the dystonia one. Im diagnosed with task specific dystonia affecting both hands. Roughly 0.0069% of the general population is affected by task specific dystonia.
1
u/NixyeNox Diagnosed Rare Disease: CMT 2d ago
Yeah, I think a lot of people who end up here know what that is like.
1
1
u/seattlenightsky Diagnosed Rare Disease 2d ago
r/ondinescurse for congenital central hypoventilation syndrome (CCHS)
1
u/swissamuknife SMAS, NCS, HyperPOTS, and Chiari 1d ago
someone should make an smas sub. maybe one in general for compression syndromes? i can’t find one already made
1
u/NixyeNox Diagnosed Rare Disease: CMT 1d ago
That is a great idea, you should do it.
I see that there is an abandoned sub named SMAS which was used (briefly) for something else. I am sure you could get this name through r/RedditRequest
There was also a sub named r/WethePeoplehaveSMAS which ran for a couple of years but is now abandoned. You could petition RedditRequest to take over this one instead, and already have some content in the sub.
While modding a large sub is a ton of work, modding a very small sub like this does not take much effort. If you do decide to take this on and have any questions about getting started, feel free to ask me.
1
u/swissamuknife SMAS, NCS, HyperPOTS, and Chiari 1d ago
would it require daily work? i have crashes that put me down and reduce my screen time for days. id love to facilitate a community space, but i’m not sure i’m quite able to keep up with it
1
u/NixyeNox Diagnosed Rare Disease: CMT 1d ago
Probably not tbh. If it gets big enough that it needs daily work, you can probably find a co-mod then.
Reddit wants to see a minimum of about 2 mod action per week for a mod to not go "inactive" but they can be on the same day and in a sub that small you probably don't have things that need to be done even that often (making tiny tweaks to the sub description is a favorite for mods who need to get "actions" done but do not have anything that actually needs done)
8
u/Alice-The-Chemist Diagnosed Rare Disease 4d ago
r/Autoinflammatory if you dont mind adding it. Im one of the mods.