r/rarediseases is a subreddit with 9k 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 research.
This is a patient community for people who have a diagnosed 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
: "My son is patient 43?"
42 posts
#2
Question
: "How do i build muscle as someone with a muscle disease? (Glycogen Storage Disease type IIIa)"
24 posts
#3
General Discussion
: "Do you get frustrated when people with hEDS monopolize the zebra symbol"
14 posts
#4
Venting
: "The lottery you don’t want to win"
8 posts
#5
Research
: "I am Abed Alrahman, a 14-year-old from Gaza with a rare disease called Larsen Syndrome. I cannot travel abroad for my treatment."
3 posts
#6
Resource
: "Advocacy - Share your Medicaid Story (US)"
2 posts
#7
News
: "The UK Government is looking for feedback regarding rare disease therapies' regulatory framework"
2 posts
#8
Looking For Others - Von Hippel-Lindau (VHL) syndrome
: "Join us at the VHL Medical Symposium in Boston (November 6-8, 2026)"
1 post
#9
Meta
: "In 1955, Iranian doctors documented one of the rarest medical cases ever recorded—a villager who developed rabies after being attacked by a rabid wolf. As the disease progressed, physicians carefully observed and filmed the patient's condition, creating what is believed to be one of the only histori"
1 post
Member Growth in r/rarediseases
Yearly
+3k members(39.8%)
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Last updated: September 18, 2026