#RareDisease is an active hashtag on Bluesky. In the last 30 days, 91 people shared 330 posts with it — around 11 a day. Activity is down 8% versus the previous week, peaking on Jul 15 with 19 posts.

Posts with #RareDisease

A s p e n🕊️©️(AspenBrave®️™️)

@aspenbrave.bsky.social

3 months ago

judgement is not fact without empathy a door some use to leave you ©️Aspen #BraveWrite #vss365 #haiku #judgement #Poetry #Poem #RareDisease Thank you for staying beside me over the years; it’s kept me alive. No judgement: a fact. 🙏 Love you, Aspen🕊️ 👇 youtu.be/pKrxD1hZb5E?si…

Women receiving an intravenous medication while undergoing medical treatment; she has lost her hair and is wearing a mask

42 59 560

allyann

@allyann.bsky.social

over 1 year ago

📌 #ChronicIllness Pinned Post 📌 This feed pulls in posts with the keywords of #ChronicIllness, #ChronicPain, #rareDisease, and #InvisiableIllness This feed can be found at bsky.app/profile/did:... Other keywords the feed pulls in can be found in the following thread below. 1/6

49 66 528

Kevin Dooley

@kevinfdooley.bsky.social

over 1 year ago

My muscle disease, inclusion body myositis (IBM), has limited my ability to travel. I’m looking for beauty closer to home, enjoying flowers from my #wheelchair. #flowers #FlowersOnFriday #disability #myositis #raredisease #EastCoastKin #ArtYear #orange #springtime #naturelovers #calm #joy #happy

Photo of a large group of marigolds, taken from a vantage point just above the height of the flowers. The flower in the foreground, an orange marigold, is in focus, while the more distant orange and yellow flowers are blurred, creating a colorful, impressionistic scene.

6 17 232

Arc System Works America

@arcsystemworks.com

about 2 months ago

Guilty Gear joins the fight against RARE 💙 Ignite Hope. ❤️ Drive Cures. A special promotion supporting #Fight4Rare begins 06.26.2026 #RareDisease #ArcSystemWorks #RaidenScienceFoundation

1 47 181

A s p e n🕊️©️(AspenBrave®️™️)

@aspenbrave.bsky.social

over 1 year ago

Step away Before you love There is no way To mend this broken dove Too far gone For #unbridled games #Reservoir of years alone My #RareDisease you can’t tame Let it be We kept aplomb Behind a fantasy My health is a ticking time bomb #BraveWrite #vss365 #Poetry #Writing 👇 youtu.be/rEXhAMtbaec?si…

Woman in a white dress cradled in a fetal position. Image by AAF/DVArt
Quote: “Rare Disease Awareness Day 🦓
If you love someone you set them free🫶
Not make them part of your misery.”
-by Aspen ‘Brave’(name given by followers) due to her battling a terminal RareDisease.

7 14 160

A s p e n🕊️©️(AspenBrave®️™️)

@aspenbrave.bsky.social

over 1 year ago

lone tear screams for me in the operating room needle biopsy #BraveWrite #vss365 #haiku #senryu #micropoetry #poetry #needle #RareDisease 🫶 Holding you~BBS Always, I love & thank you, Aspen🕊️ 👇 youtu.be/pKrxD1hZb5E?si…

Woman laying on a hospital bed. Her dark hair is pulled back as she is resting her head on a white pillow. In her hospital gown, she is staring into the camera with a pensive expression.

6 11 143

A s p e n🕊️©️(AspenBrave®️™️)

@aspenbrave.bsky.social

over 1 year ago

hold me close tonight death’s #devotion devours my life’s fragile fight #BraveWrite #vss365 #haiku #Poetry #Poet #Poem #PoetryCommunity #PoetsOfBlueSky #micropoetry 🖊️ #RareDisease 🫶 Every breath is a gift. Devote yourself to love; you’re worth it! 🪶 I love you, Aspen🕊️ 👇 youtu.be/7Lg2nqZ_qe8?si…

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

10 17 136

A s p e n🕊️©️(AspenBrave®️™️)

@aspenbrave.bsky.social

about 1 year ago

#BraveWrite #vss365 #wisteria F A L L I N G Like W I S T E R I A Petals A #RareDisease With its rain & thunder Tried to erase Her essence But she chose to smile Glistening Grabbing Glowing Every precious moment Of Life’s Presence & Grace

A woman sitting in the rain smiling in a wisteria colored dress

10 15 131

Chronic Illness Humor

@chronicillness.bsky.social

over 1 year ago

I meet a lot of my feel rare disease havers here #raredisease #chronicillnessmemes #chronicillnesshumor

What it would feel like to see someone with the same rare disease as me

[pic of bigfoot meeting nessie and bigfoot says 'bruh.']

12 11 129

@tymcgrady.bsky.social

over 1 year ago

This is not about politics. Each and every single one of us will get sick. Illness does not care who you voted for, your religion, income, race, or education. #healthcare #doctor #chronicillness #raredisease #sick #medicine #disability #nurse #healthcareworkers #medicalresearch #science

5 60 127

@aspenbrave.bsky.social

6 months ago

I am the sun You’ll never feel To the #dark #lacuna you run For any light~will kill I am the #RareDisease DNA chose you 1 in a million receive Only way out~is through I am the moon & stars In a vespertine garden you bloom Glowing from within~not from afar #BraveWrite #vss365 #PoetryCommunity