Beyond Awareness: What the Rare Disease Community Really Needs Learn more at: www.rare360.life/post/beyond-... #rareadvocacy #rarediseasecommunity #rare360 #rarediseaseday #livingrare #valentinesday

🗣️ Tell Congress: Close ALL Detention Centers! The Melt ICE Act would close all detention centers & release our neighbors back into our communities, where they belong. Join me & UWDA in demanding members of Congress co-sponsor the Melt ICE Act: actionnetwork.org/letters/dema...

Happy #LunarNewYear! Today marks the beginning of the Year of the #FireHorse in the Chinese zodiac, a symbol long associated with intensity, independence, movement, and transformation. For the #raredisease community, this symbolism resonates deeply. Learn more at: www.rare360.life/post/the-yea...

Rebuking President Trump, Congress votes to maintain most of the federal funding for libraries, museums, and archives. www.everylibrary.org/congress2026... via @everylibrary.bsky.social

I have another blue sky page for my chronic pancreatitis with EPI. I just changed the name. It’s @scarredpancreascp.bsky.social

fursona sheet coming along great

Do yourself a favor and block every account you see bashing Kamala.

Tonight’s dumb napkin cartoon…

Reuters: New Mexico lawmakers on Monday passed legislation to launch what they said was the first full investigation into what happened at Zorro Ranch, where the late U.S. sex offender Jeffrey Epstein is accused of trafficking and sexually assaulting girls and women.

A win! A federal judge has instructed the Interior Department to restore signage and video exhibits at George Washington’s former Philadelphia residence that explain his ownership of enslaved people.

I have another blue sky page for my chronic pancreatitis with EPI. I just changed the name. It’s @scarredpancreascp.bsky.social

Prospective multicenter study of patients with intractably painful #ChronicPancreatitis or RAP found total pancreatectomy with islet autotransplantation significantly reduced pain burden and improved quality of live. 🔗 ow.ly/FW0T50XA8jE

In time with the @ueg guidelines, our review on #chronicpancreatitis was published in @TheLancet authors.elsevier.com/c/1kDP6V-4XO... Thanks to #robertcverdonk #hjalmarsandvoort #naomithierens and #jeaninvanhooft

🔹 Welcome to #TrigTriviaTuesday - where we help boost your #TrigIQ. Did you know high triglycerides can trigger #AcutePancreatitis— and it’s often more severe and deadly than other causes? Even one episode increases future risk. Repeated flares? They can lead to #chronicpancreatitis or worse.

#ChronicPancreatitis (CP) is a syndrome commonly associated with clinical features of abdominal pain, exocrine and endocrine insufficiency, secondary pancreatic cancer, and other complications. 🔗 Access the online course on Gutflix: https://bit.ly/3VmddW5#ChronicPancreatitis

Well, you should see Polythene Pam…

Some humor, but still true.

This is concerning, that a rep feels they must post this. A lot in our coalition has felt the same way and worried about it, but didn’t think we’d be here publicly.

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

To celebrate #RareDiseaseDay, we've invited Matthew Osmond, #CHEO Genetic Counsellor & #Care4Rare Project Manager, to join a #SpeakerSeries panel on #Matchmaking for #RareDisease Diagnosis. Join Matthew and other #PatientMatchmaking pioneers live: us06web.zoom.us/webinar/regi...

🌟 This Month’s Rare Advocacy Spotlight: Reagan Udall Foundation for the FDA 🌟 They connect patients, clinicians, researchers & industry to advance collaboration, innovation & patient-centered solutions. 📩 Read & subscribe: https://bit.ly/46EroM7 #RareAdvocacySpotlight #RareDisease

Rare disease is more than statistics. It is lived every day by families searching for answers. For Rare Disease Month, we share global, People-First stories showing how earlier genomics and long-read WGS can shorten diagnostic journeys. Details: bit.ly/3ZyEczS #WeCareForRare #PacBio #RareDisease

🦓This month, we stand with our neighbors, caregivers, researchers, and healthcare professionals working to improve awareness, access to care, and support across our state for #raredisease. 🌶 #NewMexico needs a #RDAC! #nmleg #nmpol #nmrare #nmraredisease #showyourstripes #ziazebras

February is Rare Disease Month. The Rare Diseases, Real Stories podcast series spotlights families affected by rare diseases. Listen here: direc.to/oUKe #RareDiseaseMonth #RareDisease #RareDiseases #RareDiseasesRealStories #podcast #GeneTherapy @courageousparentsnetwork.org @uofmass.bsky.social 🎧

“Some lives are measured not in years, but in the love they leave behind.” -Unknown May sweet Liam rest in peace. #curegm1 #raredisease #childloss #grief #restinpeace

Read This: "Obama Breaks Silence on Trump’s Racist Ape Video" www.thedailybeast.com//obama-break...

👀 👀

Epstein survivors released this powerful PSA calling for ALL files to be released. These are real women, real survivors, demanding accountability. Listen to them. HEAR them. And FFS, let's all agree to believe them! Enough is enough! #ReleaseTheEpsteinFiles #StopTrump #StopTheMadness #Resist 👊🏼

🚨 Epstein survivors release this powerful PSA in advance of the Super Bowl demanding answers from the Justice Department. This is the Super Bowl ad every American should see. Spread it everywhere.

The President of America said this. I find it hard to root for a 34X convicted felon as president. A real loser.

#StandWithTheVictims #EpsteinTrumpFiles @housedemocrats.bsky.social

If Doritos could get away with it, they would sell you one chip at a time for 10 bucks a pop. Someday, they dream.

#Trump #Epstein #EpsteinFiles

CC KKKARMA GHISLAINE IS A RAPIST AND A PIMP TRUMP IS JOHN DOE 174 NAZI VEEP KKKING TRUMP IS A RABID SERIAL RAPIST PEDOPHILE PIMP FELON TRUMP IS SCUM RIP WARRIOR QUEEN VIRGINIA GUIFFRE

It only took them 12 months to build massive concentration camps all over the USA. You’d think there would be more uproar, but no. No one cares unless it’s in their backyard.