#RareDisease is an active hashtag on Bluesky. In the last 30 days, 76 people shared 288 posts with it — around 10 a day. Activity is up 10% versus the previous week, peaking on Sep 17 with 20 posts.
Tags most often used together with #RareDisease.
media.tenor.com
a woman laying down with her eyes closed and a tear running down her face
Alt: a woman laying down with her eyes closed and a tear running down her face
![What it would feel like to see someone with the same rare disease as me
[pic of bigfoot meeting nessie and bigfoot says 'bruh.']](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:dbzmdmsaz6lkhb4tv3culzme/bafkreicxkro4kzfigmubkectteigvx233qiakyhxorvhcbv2b2bs2qsqpm)
media.tenor.com
a silhouette of a woman in a dark forest with her hair blowing in the wind
Alt: a silhouette of a woman in a dark forest with her hair blowing in the wind
bit.ly
Blood marker may be clue to identifying idiopathic angioedema
Lower blood levels of the FAP enzyme may help distinguish idiopathic angioedema from other angioedema types, a study suggested.
bit.ly
Pacing myself for one event quietly erased everything else
Columnist Shawna Barnes did everything right to pace herself, but the reality of life with MG caused other obligations to fall off her radar.
plos.io
Living with a rare disease: Why lived experience must shape research
In this Perspective, Gemma Whyatt and Jodi Whitehouse—two women living with the rare condition Congenital Melanocytic Naevus—outline why lived experience must shape rare disease research from the outs...
www.genox-veille.fr
Arriving at a diagnosis: Effective strategies used by the Undiagnosed Diseases Network.
Undiagnosed rare disease · Genet Med 2026
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