PSC Support

PSC Research progress is too slow. We need to do more, faster because people with PSC don't have the luxury of time. By 2030, we will fund and support PSC research offering over £1 million in grants to researchers. Consider making a donation buff.ly/4cPoPs2 #Mission2030

Happy first day of spring! Soak up Vitamin D, chat with a friend while getting gentle exercise, which can be a real help when managing PSC fatigue, or turn walks into a fundraiser. We're here to help! fundraising@pscsupport.org.uk ➡️ buff.ly/DSXn985

because 4 slides just weren't enough 😊 #ThankyouThursday #LetsBeatPSC See how you can get involved: buff.ly/cpcufF5 (2 of 2)

Meet Becki: Healthcare strategist, MSc student, and PSC mum. She joins us as Research Project Lead Volunteer, bringing her professional expertise and lived experience of her daughter’s transplant journey to the heart of what we do. (1 of 2) #LetsBeatPSC #RareDisease #PatientVoice

New PSC-IBD research update! A UK study of 600+ patients suggests bowel cancer risk may be lower than previously thought. Early findings identify risk factors (like poorly controlled colon inflammation) & suggest new colonoscopy techniques. ➡️ buff.ly/QNdlknp #PSCresearch

What are the top 10 issues facing the PSC community? You tell us! We’re running a quick survey to find out what matters most to those affected by PSC. It's open to anyone affected by PSC - patients, family, & friends. ➡️ buff.ly/9ktsU3N #LetsBeatPSC

To the mums navigating PSC themselves, the mothers supporting a loved one, and those remembering the mums they have lost... we see you, we hear you and we will not stop until we find the treatments and cure you deserve. #MothersDay #LetsBeatPSC #RareDiseaseMums

Join us in wishing Dylan the very best of luck this Sunday as he takes on the Bath Half Marathon to support his brother Alex, who was diagnosed with PSC in 2021. buff.ly/Jj5DFvh #LetsBeatPSC #BathHalf #PSCSupport #FundraisingHero #GoodLuckDylan

Two Friday the 13ths in two months?! 😮 Statistically rare, just like PSC. But while the calendar relies on math, we rely on research. Luck won’t find a cure, science will. Don't leave it to chance. Get involved: buff.ly/cpcufF5 #LetsBeatPSC #PSCResearch

We’re recruiting new Trustees for the PSC Support board: 💰 Finance Trustee 🌟 Young Trustee 🤝 General Trustee We welcome applications from all backgrounds & ages. Could you help shape the future of PSC care? Apply by 31 March: buff.ly/v7OFVW5 Please share #LetsBeatPSC

Inside our most recent Research Roundup: -EBV & PSC link discovered -Oxford’s new cancer blood test update -Medway NHS hits a care milestone -New joint leadership team And THANK YOU to PSC community in the UK for contributions to the global itch study! buff.ly/khBMP8y

100 SAMPLES COLLECTED!🎉 Critical progress in the DNA methylation study to detect #BileDuctCancer early in people with #PSC is complete. @rodrigo_vmotta's team @TGU_Oxford is moving to advanced analysis. Thank you everyone who's given a sample to research! buff.ly/O5OUOCX

What does a ‘PSC flare’ feel like for you? ✍️ Researchers need to understand the symptoms of acute cholangitis to develop better treatments. If you’ve experienced an attack please take 15 mins to help: buff.ly/rbpks7t Available in 11 languages. #LetsBeatPSC #PSCResearch

Happy #InternationalWomensDay! Today we celebrate the women advancing PSC research and care. From clinicians and researchers to our brilliant volunteers and advocates. Their dedication offers hope to the PSC community. #IWD2026 #LetsBeatPSC #WomenInScience #ThankYou

Lucy is taking on @SemideParis this Sunday! 🇫🇷👟10 years after her first half, she’s feeling a bit "creaky" but motivated to run for a special young man & the whole #PSCcommunity. Wish her luck as she tackles 13.1 miles for a cure! ➡️ buff.ly/pvgpx1X #LetsBeatPSC

Missed our live Ask the Expert on the Asp-PSC Clinical Trial? Don't worry, you can now watch (or re-watch) this expert break down one of the largest-ever #PSC trials. ➡️ buff.ly/uh5PrON #LetsBeatPSC #ClinicalTrials #AspPSC #AskAboutAsp

Last year, the Brown family raised £7k for #PSCSupport. This year? They’re doubling it! Joe (diagnosed at 15) is a "superhero" financial advisor training for the #LondonMarathon, while Pam & Nina lead the charge in the mortgage industry. ➡️ buff.ly/4rWH3WB #LetsBeatPSC

Dr Jarman's team found a new marker present in bile ducts of a #PSCpatient subset. This is HUGE! It means lab models match what's happening in people with #PSC, accelerating efforts to 1.Define mechanisms of CCA progression 2.Detect early changes sooner ➡️ buff.ly/BxleWG7

We’ve signed the European Declaration on Innovation & Care for Rare Diseases! ✍️ With 30-36m people in the EU living with rare conditions, we’re calling for: ⏱️ Faster diagnosis 💰 Sustainable research funding 💊 Quicker access to treatments Learn more: buff.ly/WKZpiiA

Our new multinational survey in @HepatologyComm highlights the severe impact of PSC itch (pruritus) 😫finding: ✅ Itch significantly reduces quality of life & sleep. ⚠️ 75% of those on multiple meds get little or no relief. We NEED better treatments NOW. buff.ly/XQ1FlTA

Did you know there's such a thing as #WorldComplimentDay? A simple, genuine compliment can brighten someone’s spirit. 💬 Share your favourite compliment (one you’ve given or received) in the comments. 🏷️ Tag someone below who deserves a boost today! #RareDisease #LetsBeatPSC