PSC Support

100 SAMPLES COLLECTED!🎉 Critical progress in the DNA methylation study to detect #BileDuctCancer early in people with #PSC is complete. @rodrigo-motta.bsky.social's team in Oxford is moving to advanced analysis. Thank you everyone who's given a sample to research! pscsupport.org.uk/dna-methylat...

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: ec.europa.eu/eusurvey/run...

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

Dr Jarman's team found a new marker present in bile ducts of a PSC patient 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.
➡️ pscsupport.org.uk/research-wev...

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) 😫

Key findings:
✅ 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 #LetsBeatPSC #PSCItch

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

Today is #RareDiseaseDay! 🌍
From a "black box" to a global movement: we are accelerating PSC research and fighting for equity of care. Find out how we’re collaborating globally to find a cure and how you can help: buff.ly/FueATfN
#RareDiseaseDay2026 #PSCSupport #PSC

15 years into her journey, Parastoo shares what it means to be a mother, professional, and #AutoimmuneWarrior while living with a #RareDisease.

Read her story for #RareDiseaseDay: pscsupport.org.uk/parastoo/

#PSCSupport #ChronicIllness #PSC #LetsBeatPSC #LiverDisease

Rare is many. Rare is strong. Rare is Lindsay.
Diagnosed with PSC aged 24, Lindsay has navigated 2 pregnancies, 2 countries, and 2 biliary drains. This #RareDiseaseDay, we’re sharing her story in her own words.
➡️ buff.ly/MnkobfV
#LetsBeatPSC #RareDiseaseDay2026 #PSC

This #HelplinesAwarenessDay, we’re celebrating the people behind crucial support services, like our Helpline Nurse, Loren. Whether you have a question, are worried about something, or just need someone to listen, we’re here for you.
➡️ pscsupport.org.uk/helpline/
#LetsBeatPSC

A liver transplant is a gift of life, but it is not a cure.

1 in 3 people with PSC need a transplant within 10 yrs. Even after surgery, patients face lifelong medication, rejection risks, and the potential for PSC to recur.

Help us find a cure: pscsupport.org.uk/donate/
#LetsBeatPSC #PSCResearch

Let’s talk Vitamin D! ☀️ The UK’s "sunshine vitamin" is hard to come by in February. Most people are advised to supplement for bone and muscle health. For those with PSC, malabsorption is a common hurdle in PSC.
How are you getting your Vitamin D? Daily spray, tablet, or a sunny window? #LetsBeatPSC

Can aspirin lower the risk of cancer in PSC? 💊
Join our FREE Ask the Expert live webinar to explore the #AspPSCTrial.
✅ The Science
✅ The Participant Journey
✅ Live Q&A with experts
Open to anyone affected by PSC. Register 👉 buff.ly/mVHkRzm
#LetsBeatPSC #AskAboutAsp

#Bileductcancer (#CCA) is hard to spot. Why? Because it hides behind the symptoms of PSC. By investing in a diverse range of projects, from 3D bile ducts to the #AspPSC clinical trial, we're working to give the #PSCcommunity better outcomes.
Find out more: pscsupport.org.uk/tackling-cho...

PSC Support-funded research is a crucial step toward personalised PSC care. Dr Ghada Nouairia's team found molecular "signatures" in blood that may predict disease progression & CCA risk.
• Closer to tailored monitoring
• New early detection markers
ℹ️ buff.ly/13qO2nA

Flat, fluffy, or full of fruit...pancakes are as varied as PSC. 🥞
Whilst we need more research into PSC and diet, many of you have told us that dietary changes help you feel & function better. Have changes to your diet made a difference? pscsupport.org.uk/psc-eating-f...
#PancakeDay #LetsBeatPSC

Last week in Prague, Martine Walmsley and Dr. Nora Cazzagon presented the ERN RARE-LIVER PSC Working Group’s achievements and 2026 strategy.
Read the full report:
🔗 pscsupport.org.uk/progress-and...
#PSCSupport #ERNRareLiver #RareDisease #PatientAdvocacy #LetsBeatPSC

Run for PSC Support – PSC Support Run for PSC Support

If you want to take part in a run for PSC Support, get in touch with fundraising@pscsupport.org.uk or see some of our 700+ running places here; buff.ly/lUKqZZr

"PSC is a tough journey, and my friend, Kai, has faced it with unwavering courage. PSC Support has been a beacon of hope, offering invaluable support, resources, and funding for research to improve the lives of those affected by this disease." Thank you Maria and #TeamPSCSupport

Roses are red, violets are blue..we’re funding research to find a cure for you. 🌹🔬
Okay, we’re definitely better at science than poetry. This Valentine's Day consider showing your love by sharing your story, or making a donation. pscsupport.org.uk/donate/ #RareDisease #LetsBeatPSC

At #PSCSupport, we leave the superstitions at the door, focusing on:
🟣 Fact-checked, evidence-based information
🟢 Quality-assured resources you can trust
🟠 The latest clinical research and medical guidance
ℹ️ buff.ly/Yn1QQhE #FridayThe13th #LiverDisease #LetsBeatPSC

📣 Martine Walmsley and Mark Chatterley are now leading #PSCSupport. Together, they're turning ambition into action, focusing on world-class research and providing the fact-checked, quality-assured information our community relies on.
Full update: pscsupport.org.uk/leadership-u...

If you could go back to the day you were diagnosed with #PSC, what is ONE thing you wish someone had told you? We often here that the biggest game-changers are 1️⃣ finding a PSC specialist 2️⃣ connecting with the PSC community.
Quote tweet or reply with your thoughts #LetsBeatPSC

PSC affects everyone differently and treatment should reflect that. Seeing talk about Urso (UDCA) in the community? The decision to take it rests with you and your medical team. We’re here to help with fact-checked, quality-assured info. 👉 pscsupport.org.uk/treatments-f...
#LetsBeatPSC

The Elafibranor (ELASCOPE) trial is advancing to Phase 3! This is a major milestone in the search for a #PSC treatment, specifically looking at cirrhosis. We'll share recruitment details as soon as they are available. #LetsBeatPSC
Trial info 👉 clinicaltrials.gov/study/NCT073...
#ClinicalTrials

Help improve psychological support for liver transplant patients & families. @UKODTRN wants to hear from you. Your anonymous responses will directly shape future support services. Closes: 22 Feb. 👉 forms.office.com/e/6UB1uW4ECD
#LiverTransplant #PSCSupport #PatientVoice #UKODTRN