r/raredisease
579 members
r/raredisease is a subreddit with 579 members. The most common kinds of discussions are advice requests and solution requests, and the community frequently discusses rare disease, research, awareness, rare disease day, and porphyria.
Rare diseases impacts many lives today. While it impacts us all differently, we do share many of the battles.
Popular Themes in r/raredisease
#1
Advice Requests
: "Please help understand rathke cleft cyst dimension"
9 posts
#2
Solution Requests
: "Rare Disease Resource Database: Librarey"
7 posts
#3
Pain & Anger
: "Why don't people care?"
4 posts
#4
Money Talk
: "How will we pay for this? "Rare caregiving" costs in the US"
3 posts
#5
Opportunities
: "Medical Record Consolidation"
1 post
#6
Self-Promotion
: "Taking Control of Your Healthcare Data - We'd love your feedback!"
1 post
#7
News
: "FDA approves first treatment for inherited rare disease (hepatic porphyria) | 20NOV19"
1 post
Popular Topics in r/raredisease
#1
Rare Disease
: "12-Year-Old Girl With Rare Disease Has Unlikely Best Friend: A 330-Pound Powerlifter Nicknamed 'The Beast'"
38 posts
#2
Research
: "Rare disease Research"
13 posts
#3
Awareness
: "Help spread Awareness for a rare disease I have called Friedreich's ataxia."
6 posts
#4
Rare Disease Day
: "Rare Disease Day Official Video 2017"
5 posts
#5
Porphyria
: "Things you may not know about Acute Intermittent Porphyria"
3 posts
#6
Treatment
: "Real working medical trials of Treatment rare or genetic diseases using SCNT"
3 posts
#7
Cakeday
: "Happy Cakeday, r/raredisease! Today you're 9"
3 posts
#8
Rathke Cleft Cyst
: "Please help understand Rathke Cleft Cyst dimension"
3 posts
#9
Support
: "More people need to Support such efforts"
2 posts
#10
Celebrity
: "Angelina Jolie's Rare Disease"
2 posts
Member Growth in r/raredisease
Yearly
+90 members(18.4%)
About
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Last updated: June 16, 2026