PSC Support

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

PSC affects everyone differently, and that’s why your story matters. This #RareDiseaseDay (Feb 28) your journey with PSC can help others feel less alone.
Ready to share? 💌 emily@pscsupport.org.uk @rarediseasedayofficial #LetsBeatPSC

Health literacy is key in the rare disease community. We bridge the gap between complex science and patient understanding by providing jargon-free research summaries . Read about new research looking at a potential link between Epstein-Barr virus and PSC. buff.ly/0Cl4lxE

Got questions about PSC? Book a free, confidential call or Zoom with our specialist nurse, Loren. February slots are now open! 👉 buff.ly/dc8o4zR%F0%9...
#LetsBeatPSC #PSCSupport #RareDisease #ChronicIllness #HelplinesAwarenessDay #LiverDisease #NursingSupport @HelplinesUK

🧬 PSC vs. PBC: What’s the difference?
They might sound similar, but Primary Sclerosing Cholangitis and Primary Biliary Cholangitis are distinct conditions with different paths. Understanding the differences is key to getting the right care & support 👉️ buff.ly/X5TGSzg

🎙️ Experts: Prof Douglas Thorburn, Prof Maria Hawkins, Ms Anya Adair & Sally Falk.

We share this sensitively, knowing it is a difficult topic, to ensure our community stays informed. #PSCSupport #RareDisease

New treatment pathways are opening up for patients with PSC and CCA in the UK. Join @AMMFCharity for a specialist webinar on #LiverTransplantation and #ProtonBeamTherapy. 📆 11 Feb | 18:00
Register: us02web.zoom.us/webinar/regi...
#PSCSupport #RareDisease #LetsBeatPSC

Myth: Only older people get PSC. Fact: PSC can affect anyone at any age, even children.
It’s time to stop misconceptions. Let’s replace myths with facts to ensure no one faces this #RareDisease alone.
Learn more: www.pscsupport.org.uk
#PSCSupport #LetsBeatPSC #LiverDisease

Our funded international research, led by Prof Bañales & Dr Rodrigues, is making significant progress. They have analysed 800+ patient samples, with biomarkers continuing to show promise in identifying those at higher risk and with early-stage cancer.
👉️ pscsupport.org.uk/research-wev... #Mission2030

Canals, Windmills, and a Cure! 🇳🇱 General sale for the Amsterdam Marathon is SOLD OUT, but we have places! Join #TeamPSCSupport on 18 Oct 2026 for a flat, fast, and scenic run through the heart of the city. 🏅
👉 runforcharity.com/charity-land...
#AmsterdamMarathon #PSCSupport #LetsBeatPSC

In 2007, there were 0 clinical trials for PSC. In 2026, we have momentum like never before. We’ve moved from hope to measuring quality of life and preventing complications. But the job isn't done until we have a cure for 100% of our community.
➡️ pscsupport.org.uk/donate/

This #ThankYouThursday, we’re honouring the memory of Gregor. 🧡
His cousin Alice raised an incredible £4,075 through a prize draw with her jewellery business. A massive thank you to Alice & her family for supporting our work in Gregor’s name. 💍✨ #LetsBeatPSC #PSCSupport

You're not alone. Whether you’ve been living with PSC for years, were diagnosed yesterday, or are supporting a loved one, our private FB group is a space where you can ask questions, share your highs (and lows), or simply be seen by people who “get it.” buff.ly/UM7NQGF

Watching a loved one live with PSC can feel overwhelming, but you can always help. Melanie & her family showed support for Ryan by tackling an inflatable course! They raised vital funds & had a laugh along the way.
Ready to start your fundraising journey? buff.ly/lbz1D3C