Rare Disease Bluesky Starter Packs

PSC

This is a starter pack of people researching primary sclerosing cholangitis. We're a rare bunch, like PCS itself, so please recommend/invite others working on PSC.

Kate Coldwell

@katecoldwell.bsky.social

1 mentions

May 8, 2025

Rare Disease

A feed for the rare disease community

autumnwaves.bsky.social

@autumnwaves.bsky.social

2 mentions

Mar 8, 2025

CDKL5 Starter Pack

Joining the CDKL5 community together here on BlueSky! If you want to be added, let us know!

CDKL5 in Color

@cdkl5incolor.bsky.social

1 mentions

Jan 29, 2025

hEDS & Co. Conditions Support #NEISVoid

Just some of the individuals & organisations that support/help those of us with any of these #NEISVoid conditions #hEDS #EDS/#HSD #POTS/#OI #Dysautonomia #pwME #ME/CFS #MCAS #CCI #LongCovid #Covid #ND (List will alter). May we now grow in a better environment here to help find the less rocky route.

@BendyHEDS&Co

@bendyhedsandco.bsky.social

2 mentions

Jan 27, 2025

DSRCT Support Group

DSRCT is a rare childhood sarcoma. This post is intended to gather information in one place for patients, caregivers, family, friends and anyone interested in this type of cancer.

Patty

@dsrct.bsky.social

1 mentions

Jan 20, 2025

Pediatric Pulmonology Rockstars

Follow us to chat about babies, inhalers, rare lung disease and equity. Small AND mighty!

Terri Laguna MD MSCS ATSF

@terrilaguna.bsky.social

1 mentions

Dec 14, 2024

Zebra Gang (Ehlers-Danlos)

A list of people with EDS who have volunteered to go on the journey together. Official dx not required; we know how hard it is to get.

Rachel Sharp

@wrrrdnrrrdgrrrl.com

3 mentions

Nov 27, 2024

Rare disease genomics / clinical informatics

A collection of awesome people working in rare disease genetics / genomics and clinical informatics. I will miss people, so please suggest people to add.

Nicky Whiffin

@nickywhiffin.bsky.social

Nov 25, 2024