#rareDiseaseAwareness is an active hashtag on Bluesky. In the last 30 days, 6 people shared 58 posts with it — around 2 a day. Activity is down 21% versus the previous week, peaking on Jul 9 with 3 posts.

Posts with #rareDiseaseAwareness

KingTiger

@kingtiger.bsky.social

2 days ago

bones We're playing more Ship Graveyard Simulator 2! LIVE NOW on Twitch w/ @queencheetah.bsky.social twitch.tv/felineroyalt... #smallstreamer #cats #neurodivergent #chill #mentalhealth #chronicillness #rarediseaseawareness #FelineRoyalty #cozy #disabled #LGBTQIAPlus

twitch.tv

FelineRoyaltyFam - Twitch

Hello!! We are FelineRoyaltyFam: KingTiger, QueenCheetah, and BanShi. We are a family of neurodivergent, queer gamers who create a safe space for people to come and hang out! We stream 3 times a week:...

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A s p e n🕊️©️(AspenBrave®️™️)

@aspenbrave.bsky.social

6 months ago

👆PLEASE READ ABOVE🙏 Most of you know I have a #RareDisease…I thank you for your tolerance & kindness as my health does not always allow me to be here daily… Right now, I’m fighting an infection, but know #YouMatter! I love & miss you, Aspen (BBS) 🦓 #RareDiseaseAwareness 👇 youtu.be/QDp2jWAAHF8

A woman holding a person vanishing. It says, “Sometimes the most painful thing you will ever have to let go if is an older version of yourself.”
@AspenBrave

“Show Your Stripes On Rare Disease Day
2/28/26”

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Indie Aut. Stuart Miller (ASM) 📖✍️🤓 Writing book #3

@stuartmiller1.bsky.social

7 months ago

"wonderfullifewithbedford: So I’ll keep sharing with my whole heart. Glad you’re here ❤️ #buildforbeddy #rarediseaseawareness #schwartzjampelsyndrome" Seeing videos of people overcoming struggles & adversity, warms my heart and fills me with immense joy 🥹🫶💪🫂🙏

5 11 27

CT Rare Advocate

@rarectadvocate.com

1 day ago

Klippel-Feil Syndrome (KFS) is a rare condition where two or more neck bones fuse together before birth, often limiting neck motion and sometimes affecting the spinal cord. Learn more: kfsfreedom.wordpress.com/ You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Klippel-Feil Syndrome (KFS), a rare congenital disorder where neck vertebrae fuse together before birth. The card explains it can cause a short neck, limited neck motion, scoliosis, and related conditions like hearing loss or kidney anomalies. Footer reads: You may be rare, but you're not alone! rarectadvocate.com

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CT Rare Advocate

@rarectadvocate.com

3 days ago

Skraban-Deardorff Syndrome is a rare genetic disorder caused by WDR26 gene variants, leading to intellectual disability, seizures, low muscle tone, and distinctive facial features. Learn more: skdeas.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for Skraban-Deardorff syndrome, a rare genetic neurodevelopmental disorder caused by variants in the WDR26 gene. The card notes it causes intellectual disability, seizures, and distinctive facial features, with fewer than 1,000 known cases in the U.S. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

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✨Super Leftist Villian✨

@dom3sticgoddess.bsky.social

over 1 year ago

My daughter was born at 26weeks weighing in at less than 500grams and 10 inches long. She’s been collecting social security since the day she was born. She is still oxygen dependent and has Idiopathic Pulmonary Hemosiderosis. #resist #rarediseaseawareness #HandsOff

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KingTiger

@kingtiger.bsky.social

7 days ago

skong BanShi is playing Silksong! LIVE NOW on Twitch twitch.tv/felineroyalt... #smallstreamer #cats #neurodivergent #chill #mentalhealth #chronicillness #rarediseaseawareness #FelineRoyalty #cozy #disabled #LGBTQIAPlus

twitch.tv

FelineRoyaltyFam - Live on Twitch

skong | Streaming hollow knight: silksong.

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Julian 🏳️‍⚧️♿️🦓💜🥄(He/they)

@chronicallyjulianx.bsky.social

over 1 year ago

Chronic & terminal illness gets to me. I know it gets to a lot of you. Don’t give up the fight with it! We got it! We will get through the hard times together. I know it doesn’t ever seem like there’s a way out but if we have each other we can always make it through anything. 💜 #rarediseaseawareness

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Angioedema News

@angioedemanews.bsky.social

3 days ago

#HAE #HereditaryAngioedema #RareDisease #RareDiseaseAwareness #KidneyTransplant #TransplantMedicine #LivingDonor #PatientCare #RareDiseaseCommunity #Angioedema #MedicalResearch #HealthAdvocacy #ChronicIllnessAwareness #RareDiseaseNews #PatientEducation #BioNews #AngioedemaNews

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CT Rare Advocate

@rarectadvocate.com

6 days ago

Cryopyrin-Associated Periodic Syndromes (CAPS) is a family of three rare autoinflammatory disorders, ranging from mild to severe, caused by mutations in the NLRP3 gene. Learn more: dub.sh/CAPS1 You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

Info card for CAPS, Cryopyrin-Associated Periodic Syndromes, a rare autoinflammatory disease spectrum caused by NLRP3 gene mutations. The card explains CAPS spans three forms of increasing severity, FCAS, Muckle-Wells syndrome, and NOMID, with symptoms like fever, rash, hearing loss, and joint damage. Footer reads: You may be rare, but you're not alone! rarectadvocate.com

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Die Federführerin

@sabrinateifel.bsky.social

5 months ago

Heute ist #RareDiseaseDay und weil ich so was auch hab, durfte ich vor 2 Jahren Teil mehrerer Aktionen und Kampagnen sein. Ein bisschen was davon teile ich hier mit euch - manches ist leider mit Paywall. #NMOSD #RareDiseaseAwareness