r/rarediseases is a subreddit with 8k members. The community frequently discusses rare disease, symptoms, rare diseases, treatment, and disease, and the most common flair used is looking for others, question, general discussion, venting, and news.
This sub is for people who have a rare disease to discuss their experiences. Dealing with uncommon symptoms can be frustrating. Even if no one here has your rare disease, we have all had to deal with some of the same hurdles navigating society and the healthcare system.
Friends & family of people with a rare disease are welcome here, as are healthcare workers and researchers who deal with rare diseases.
Popular Topics in r/rarediseases
#1
Rare Disease
51 posts
#2
Symptoms
27 posts
#3
Rare Diseases
24 posts
#4
Treatment
13 posts
#5
Disease
8 posts
#6
Undiagnosed
8 posts
#7
Syndrome
5 posts
#8
Diagnosis
4 posts
#9
Rare
4 posts
#10
Undiagnosed Condition
4 posts
Flair Used in r/rarediseases
#1
Looking For Others
: "Doctors couldn‘t explain why our newborn was dying. Weeks later they discovered one of the world rarest genetic disorders"
43 posts
#2
Question
: "Feeling isolated as husband is choosing not to share his diagnosis with others"
20 posts
#3
General Discussion
: "Do you get frustrated when people with hEDS monopolize the zebra symbol"
18 posts
#4
Venting
: "I Just Want to Scream"
15 posts
#5
News
: "What happens when frameworks and models don't incorporate the full spectrum of human health and disease... aka rare disease research matters for everyone. It's all of us, or none of us."
3 posts
#6
Meta
: "When you center rare disease, you outperform the room"
2 posts
#7
Resource
: "Advocacy - Share your Medicaid Story (US)"
2 posts
#8
Research
: "Submitting myself to be studied?"
2 posts
#9
Looking For Others (MODY)
: "MODY or Neonatal Diabetes"
1 post
Member Growth in r/rarediseases
Yearly
+2k members(41.0%)
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Last updated: July 26, 2026