#RareDisease…I
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mx-murphy.bsky.social
With all my current personal life drama, I almost forgot!

Happy rare disease month to me.

By some miracle, PNH didn't kill me last year, but it sure did give me a new (dis)respect for it.

#raredisease #chronicillness #PNH #disability #ParoxysmalNocturnalHemoglobinuria
the word rare is displayed in a rainbow of colors on a black background .
ALT: the word rare is displayed in a rainbow of colors on a black background .
media.tenor.com
February 14, 2026 at 3:31 PM
stern-sydney.bsky.social
#RepresentationMatters 🦓 #RareDiseases aren’t always visible.
I live with #TGCT, a rare, unpredictable joint tumor that causes pain, stiffness & mobility limitations.
And yet, 1 in 10 Americans has a rare disease. Rare ≠ alone. #RareDisease #ShowYourStripes #PVNS
February 14, 2026 at 1:25 AM
aspenbrave.bsky.social
👆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”
February 13, 2026 at 9:25 AM
aspenbrave.bsky.social
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
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
media.tenor.com
February 13, 2026 at 9:18 AM
thezebraalliance.bsky.social
How are you feeling?
🫠🥺😵‍💫😄🫣😎🫩😖☺️

Need help finding mental health resources: We will help you find what you need 🩵

linktr.ee/thezebraalliance
#mentalhealth #chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability ##ehlersdanlossyndrome
How's your brain? A bit too gooey LOUD! Haunted At max capacity Too thinky Not thinking enough Fragile Victimized by this cruel world Sunny Do not disturb mode Detached All shook-up Foggy I want a refund (lol) Full of silly songs Sparkling Describe your sad: BIG sad small sad Light sprinkling of sad Rising sad Sharp sad Confusingly beautiful sad Heavy sad Creeping sad Sad on toast
February 7, 2026 at 9:31 PM
laurenctesta.bsky.social
For both #RareDisease month and #MarfanSyndrome awareness month, I thought I'd share this article I wrote for the @ahajournals.bsky.social about being a patient-scientist working on developing genetic therapies for my condition and related conditions.
February 7, 2026 at 8:26 PM
tomstaniford.bsky.social
Last November I was privileged to speak at @camrare.bsky.social's #RAREsummit25 on a panel devoted to #MentalHealth for #RareDisease. You can now watch the full 30-min fireside chat over on their YouTube channel. www.youtube.com/watch?v=IyJx...
RAREsummit25 - Mental Wellbeing - Supporting mental health while living with a rare condition
YouTube video by Cambridge Rare Disease Network (CamRARE)
www.youtube.com
February 6, 2026 at 7:53 AM
missnieto.bsky.social
Uuugghhhh!!! So annoying my knee is still giving me problems! Knee brace and rest all day when I have stuff I wanna do is no bueno!
#XLH
#raredisease
#crysvita
February 1, 2026 at 6:09 PM
thezebraalliance.bsky.social
Happy Caturday 😽
Are you tired/exhausted/in pain? Take a nap, and do not feel guilty for doing so. It is called Self Care. I mean, look at cats: Master nappers haha

linktr.ee/thezebraalliance
#caturday #mentalhealth #health #chronicillness #ehlersdanlossyndrome #EDS #raredisease #memes #selfcare
Art by Katie Abey Cat Fairy "I am the nap fairy and I hereby grant you multiple guilty free naps."
January 31, 2026 at 2:42 PM
duffhueslab.bsky.social
Just arrived in Madrid 🇪🇸for the second annual meeting of the @rarascsic.bsky.social network—great news that the network has been extended for at least another year! 💪 Guess who I found on the train @hugogdtc.bsky.social … #ISPA #raredisease
January 26, 2026 at 11:53 AM
laurenctesta.bsky.social
Closed out my presentation the only way I know how: advocating for genetic therapies for ALL #RareDisease

(PS - new bluesky name just dropped 🔥)
January 24, 2026 at 11:26 PM
aspenbrave.bsky.social
some things always loom
fever is rising again
crayon is sick, too

(Live Video Feed of Me👇😉)

#BraveWrite #vss365 #haiku
#PoetryCommunity #Poetry
#RareDisease #loom

Still reading when I can❤️‍🩹
Love you all & your creativity🖍️,
Aspen🕊️

(BBS🤒)
👇
youtu.be/HZq-G6wEH6k?si…
a little girl is laying on the floor in a playground with the words status written on the bottom
Alt: a little girl is laying on the floor in a playground with the words status written on the bottom
media.tenor.com
January 20, 2026 at 4:47 AM
achronicvoice.com
"I am one of a kind, and therefore a #medical curiosity. #Doctors often blurt out that my situation is “fascinating” before catching themselves; they’re aware that nobody really wants to be fascinating in quite this way.": buff.ly/7oVG2hq

via @NewYorker.com
#RareDisease #InvisibleIllness #NEisVoid
Nobody Has My Condition But Me
Medical researchers find my genetic mutation endlessly fascinating. But being unique isn’t a plus when you’re a patient.
buff.ly
January 19, 2026 at 11:30 AM
rarediseaseadvisor.bsky.social
ℹ️ The Truth About Liver Cancer (TTALC)

@bluefaeryliver.bsky.social 90-min workshop & YouTube series for patients & caregivers.

Learn more about the TTALC workshops: https://bit.ly/4qwbbRi

#RareAdvocacySpotlight #BlueFaery #LiverCancer #RareDisease
January 16, 2026 at 7:00 PM
angiodysplasie.bsky.social
angiodysplasie.ch/en/farewell-...
I have Parkes Weber syndrome—an inherited vascular disorder that manifests through arteriovenous malformations ...
#raredisease #parkesweber #privacy #medicalgaze #experience
Farewell to the Fairground – Swiss Angiodysplasia Association
angiodysplasie.ch
January 15, 2026 at 7:27 PM
thezebraalliance.bsky.social
It's a wonderful life 🥰 NOT! 🫩😣🥺👉 Ignorance is bliss for uncompassionate people, but miserable for those who live with chronic illnesses. 🫂
#chronicillness #raredisease #chronicpain #invisibleillness #EDS #ehlersdanlossyndrome #disability #dynamicdisability #mentalhealth
Oh yes Im faking multiple chronic illnesses... All I wanted in life is sit at home alone every day, live on benefits, lose my career, my business and most of my friends so I could get attention from people that gossip about me, call me lazy and don't believe me.
January 14, 2026 at 11:39 PM
kuglerelisabeth.bsky.social
3/3
🔹go big: being a media partner at ELRIG, multiple times on BBC radio, or on pharma patient engagement boards wasn't something I had on my cards for 2025...

#sme #smallBusiness #startup #sciencecommunication #raredisease
January 14, 2026 at 10:45 AM
bdseritt.bsky.social
Today is one of those days where I wish they’d put coke back in coke. Making my dental appointment for 4 more teeth to be pulled. Because who needs teeth? #SjogrensSyndrome #ChronicIllness #RareDisease #ChronicDisease
January 12, 2026 at 8:56 PM
nowbreezing.ntw.app

Bluesky's Top 10 Trending Words (past 10min):
💨x1* - epstein 🔓
💨x1* - democracy 🔓
💨x44 - lacey
💨x37 - diminish
💨x32 - welker
💨x23 - sesko
💨x1* - ukraine 🔓
💨x20 - homan
💨x1* - gaza 🔓
💨x16 - tapper
*🔓 = Unlocked Emergency Words (see img)

#FreePalestine 🇵🇸

(Something not right? Reply!)
Word Cloud; its top words (sorted by weighted frequency, descending): epstein*, democracy*, lacey, diminish, welker, sesko, ukraine*, homan, gaza*, tapper, romo, weir, shea, 1﹐667, wolfsburg, jags, erich, feta, rebaja, dalot, $50k, tambien, kincaid, jaguars, frey, däniken, dobrindt, rhetoric, jacksonville, inflammatory, harbaugh, good's, brighton, 連休, 知識, toulouse, synagogue, sliced, shakir, ross, reza, protestors, pahlavi, mullahs, laschet, iran, hooper, gdq, fixated, exactamente, czar, cucumber, bregman, bayern, 2026-01-11, 成人, コラボ, wanking, uyuz, utd, untrained, trevor, trad, titina, thorn, stalls, slightly, rooster, replays, renee, proteste, posten, penalties, paramilitary, olives, nonviolent, metroidvania, mete, meltzer, medeiros, lacey's, lac, labelled, koch, iranian, inverse, hälfte, humains, hinweis, grandma's, goretzka, globes, foreigner, fletch, eastenders, doocy, deepfake, cunha, competitions, cilantro, chilli, cheias, charme, capitals, blaster, arbeitet, anti-ice, ackman, @kristenwelker.bsky.social, 35mm, 1935, 우리가, 아니면, 遊ん, 能力, 相性, 教師, 後悔, 実力, 喋っ, 兄弟, 休日, 人数, 予感, フェス, コンテンツ, キー, わかん, ゆる, どうせ, いただけ, ある程度, مردم, היה, хорошо, ни, была, yuta, wpl, welbeck, wanker, viciously, veg, varsa, utmost, unintentionally, unimportant, unes, undercover, unarmed, tsk, trent, tragedies, theyve, terrorizing, taker, sweeps, swalwell, sven, sunday, suburb, storylines, steuergeld, sprayed, speedrunning, songwriting, snippets, smithsonian, slovakia, sickens, sheldon, sharpen, scripted, rye, rumored, reynolds, ressemble, residency, renée, rené, regimen, regierung, racer, qbs, protéger, protesters, promete, predicament, pibble, penultimate, pats, patagonia, packers, paciente, osea, olise, okie, noem, mysteriously, mushy Hashtag Cloud; its hashtagged words/phrases (sorted by weighted frequency, descending): ice, fcbwob, mufc, iran, reneegood, aiartcommunity, qp, munbha, fuckice, tits, snow, nfl, girlsowncc, facup, abolishice, generativeart, billsmafia, synthart, stunday, streetphotography, landscapephotography, hiphop, reneenicolegood, nsfwbluesky, minecraft, handsoff, bufvsjax, bluepithype, aiartwork, worldbuilding, vgen, startrek, spicy, pupplay, penis, of, naughty, nato, mountains, minnesota, linux, lgbt, jaguars, iceoutforgood, helluvaboss, greenland, gobills, fursona, elbowsup, dhs, comedy, chudai, chastity, booty, bills, bhafc, balls, abstractart, wolqotd, wataa, vampires, urgent, unity, transgirl, thomasandfriends, taboo, sundaybunday, squirt, scnats26, repost, raredisease, psychology, playstation, petite, noem, nflplayoffs, ncfc, monster, mindfulness, marvelrivals, jonathanross, jdvance, jazz, iranprotests, indivisible, iceout, hole, hiking, grok, goonfuel, ghiblitv, german, freeiran, flyeaglesfly, falloutnewvegas, entertainment, däniken, discord, dadson, cycling, contemporaryart, bluezicos, bate, arts, aiartist, 5debutalbums9094, 협박플, 육변기, 신상상납, 남존여비, 違国日記, 漫画, 新刊, 今日は何の日, メンズ, コミック, アクセサリー, ふるさと納税, ชุมชนนักวาด, zelda, xivnsfw, xivafterdark, writers, watercolorpainting, water, walkforpeace, videos, vaggie, uspoli, uscsrfc, united, un, u18womensworlds, ttte, trêsgraças, truth, trumpepstein, travelphotography, trash, trap, transporn, toes, thighs, thfc, thesims4, telh, technews, tax, switch2, supermariobros, suck, studybullet-22, study, striptease, storytelling, stopthecoup, stephenmiller, steammachine, spotthescammer, sportingkc, splatoon3, soles, softcock, snowflake, smg4, shortstory, shootfilm, shapeshifter, sermaye, selfie, select, seductivesunday, scifiart, roguelike, rockstargames, robocop, rescuedog, rejoineu, reels, readers, raven, rap, pwhl, psg, protogen, privacy, portraiture, portland, poppyplaytime, pompey, pollyplantar, pnw, piss, paintings, openaccess, onthisdate, occultsky, nunday, nsfwartist, np Emoji Cloud; its emojis (sorted by weighted frequency, descending): 👃, 🫧, 🦾, 🦬, 🙏🏿, 😾, 😧, 👸, 👋🏾, 🏴󠁧󠁢󠁳󠁣󠁴󠁿, 🏴󠁧󠁢󠁥󠁮󠁧󠁿, 🇬🇱, ❄, ⛸️, ☝, 🫵🏻, 🪧, 🪖, 🧬, 🧤, 🧣, 🧊, 🦴, 🦕, 🦑, 🦐, 🦀, 🥾, 🥼, 🥷🏾, 🥞, 🥓, 🤞🏾, 🤜🏻, 🤛🏻, 🟫, 🛳️, 🛁, 🚒, 🙏🏾, 🙋🏻‍♀️, 🙇‍♂️, 😥, 🗨️, 🗡️, 🖕🏽, 🕛, 🔶, 🔦, 📼, 📎, 📂, 💿, 💟, 💅, 💄, 👟, 👊🏼, 🐱, 🐬, 🐕‍🦺, 🐋, 🐊, 🏻, 🏴, 🏖, 🏋️, 🎾, 🎻, 🎙️, 🍜, 🌴, 🌨️, 🌨, 🉐, 🈵, 🇾🇪, 🇺🇲, 🇮🇷, 🇨🇴, 🇨🇭, 🃏, ⬇, ✊🏿, ✊🏾, ✊🏽, ✊🏻, ⛰️, ⛅, ↗️, ℹ️ Emoji Legend 💨x# | "Increased Trending Rate" for a Word (meaningful value; "💨x8 - burger" will mean "burger" is trending at 8 times its own normal rate for this time of day) 🔓 | "Unlocked" Ongoing Emergency Word (such words are not weighted down by their own previous usage; their *ongoing* increased usage--weeks, months, years--would otherwise move them down the list.) [PREVIOUSLY USED] ⚠️💨# | "Trend Strength Rating" ⚠️🌀💨 | "Trend Strength Rating" (see above) ⚠️🌀 CAT. # | [same; "CAT." = Category, like hurricane] 💬# | 10min Post Count 🆎# | 10min Word Count 🙂# | 10min Emoji Count
January 11, 2026 at 6:20 PM
drlauraisaud.bsky.social
I just want that body rejuvenation sarcophagus that the alien pharaoh had in the Stargate movie. Is that really so much to ask for?? 🤣🙏🥺🦄🦓 #Spoonie #RareDisease #Unicorn #Zebra
January 10, 2026 at 3:33 AM
dmmjournal.bsky.social
John Hellicar, Dominic Lenz, Martin Lowe & co used #fibroblasts from individuals with #CALFAN syndrome, which affects the nervous system and liver, and revealed an accumulation of the secretory cargo procollagen type I in the #EndoplasmicReticulum

#RareDisease

Read doi.org/10.1242/dmm....
January 7, 2026 at 12:01 PM
bdseritt.bsky.social
#Autoimmune reaction to taking a shower caused me to collect #Immuncoon today. These diseases are dynamic and that means I don’t know how I’m going to feel minute to minute. #chronicillness #raredisease #MCAS #maladiemon #tradingcard #WorstTradingCardGame
January 5, 2026 at 10:34 PM
angiodysplasie.bsky.social
At birth, I was diagnosed with Klippel-Trénaunay syndrome. For a long time, the malformation was perceived mainly through what was visible: my left leg with a large port-wine stain....
angiodysplasie.ch/en/my-story-...
#raredisease #kts #klippeltrenaunay #story
My Story with Klippel-Trénaunay Syndrome – Verband Angiodysplasie Schweiz
angiodysplasie.ch
January 5, 2026 at 7:01 PM
thezebraalliance.bsky.social
Have you ever thought about all of the nasty ingredients in the products we use every day and, "I wonder if this triggered genetic/hereditary conditions, or caused some chronic illnesses?" We sure have.
#nontoxicliving #healthcare #chronicillness #raredisease #EDS #ehlersdanlossyndrome #disability
lueoutdoors.bsky.social LUE Outdoors @lueoutdoors.bsky.social · Jan 3
We just did a big update!
Do you want to learn about ingredients that are in the products we use every day? Looking for helpful resources to make finding sustainable products easier? Youll want to give this a read.
Toxic and Harmful Ingredients and Fast Production need to end! #SustainableLiving
Obsessed: Skincare. Beauty Products. Perfumes. Hair Products. | LUE Outdoors
My niece inspired this post: She is obsessed with skincare and cosmetic products! ...
lueoutdoorsblog.square.site
January 4, 2026 at 3:35 PM
drlauraisaud.bsky.social
Use the bath bomb. Take the bubble bath. Light the expensive candle. Wear the nice perfume. Use the fancy lotion. I don’t save things for a “special occasion” now. Living is special enough. And every day is a gift to use. #ChronicPain #ChronicIllness #RareDisease #DisabledLife
January 4, 2026 at 12:49 AM