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

Exciting news: We're growing! To continue to deliver our strategy, we’re investing in a full-time employed Research and Advocacy Officer. Could this be the perfect role for you? 🔗 buff.ly/5StsRxj #LetsBeatPSC #Hiring #CharityJobs #WeAreRecruiting #PSCResearch

Best of luck to our Edinburgh Marathon Festival runner representing #TeamPSCSupport today! Enjoy the sounds of bagpipes in the air and the Scottish wind in your face. You got this! If you're feeling inspired we can help: buff.ly/36vWPR2 #LetsBeatPSC

After her son was diagnosed with PSC & IBD Julie felt helpless. "As the disease progresses, Jack will eventually need a liver transplant. This may be the only way for him to survive." This weekend she's walking 100kms to raise funds & awareness. ➡️buff.ly/BeblduC

Big Give Small Charity Week is coming! Our goal is to raise £20,000 to fund PSC research. For one week only, from 22-29 June, every pound you donate will be doubled. And if you’re a UK taxpayer and add Gift Aid, £1 becomes £2.25! 👉 Find out more: buff.ly/jv2UzMC

This #ThankYouThursday we're thrilled to announce that we have secured funding from The James Tudor Foundation to keep our vital helpline running for another full year! 👉 Our helpline is here for you, get in touch here: buff.ly/LV0LBDA #PSCSupport #LetsBeatPSC

Are there any PSC clinical trials recruiting right now? Why yes, yes there are! buff.ly/pGGvTPj #PSCSupport #LetsBeatPSC #ClinicalTrialsDay2026 #RareDiseaseWarrior #MedicalBreakthrough #ResearchMatters #PatientPower

Up to 80% of people with PSC have IBD, making annual colonoscopies a regular routine. Many people report that the worst part isn’t the colonoscopy itself but the bowel prep. The PSC community have shared their best hacks. ⤵️ buff.ly/wMBgklu #WorldIBDDay #LetsBeatPSC

Why do we co-author scientific papers? To make sure the researchers understand the reality of living with PSC. We’re a voice in the lab, shaping the future of care through global collaboration. See our recently updated Publications List: buff.ly/Ofl74mC #LetsBeatPSC

We're working hard to find a cure or treatment for PSC. But we can't do it without our volunteers. If you are someone with PSC, or a close family member of someone with PSC, consider joining one of our patient panels to share your views: buff.ly/IqTCBvc #LetsBeatPSC

Note: Volixibat targets symptom control; it is not yet known if it affects underlying liver disease progression. Common side effects included stomach issues (like diarrhoea). Read our full, plain-English breakdown here: 🔗 buff.ly/lCTVDIZ (3/3)

More than half of participants (55.6%) taking volixibat saw their daily itch scores drop by 2+ points on a 0–10 scale, with improvements seen within 1–2 weeks. Volixibat helps clear bile acids in the gut to reduce the daily symptom burden of cholestatic pruritus. (2/3)

📢 Encouraging clinical trial data: Mirum Pharmaceuticals has announced positive results from its global VISTAS Phase 2b trial evaluating volixibat. Data shows the experimental medicine significantly reduces severe liver-related itch in adults with PSC. (1/3)

Today Mark is advocating for people with PSC at the Dr Falk meeting for IBD doctors. We know there are many people with IBD out there who also have PSC but they just don't know it. Learn more about PSC-IBD: buff.ly/VaYVM8T #LetsBeatPSC #PSCIBD #RareDisease

In the last year 140+ people accessed our Helpline - 46% seeking help with diagnosis & symptoms. Mark, our Head of Ops, used this service himself in 2009 when it was volunteer-led. Now it's managed by Loren, an autoimmune specialist nurse: buff.ly/6jqZazn #LetsBeatPSC

Thank you to everyone who has filled out our gallbladder survey! It's the final countdown now, survey closes 18th May. We need your voice to help us advocate for better PSC care. Got 10 minutes? Take part here: 🔗 buff.ly/07WN01g #PSCSupport #RareDisease #LetsBeatPSC

Thank you to all nurses dedicated to patient care. We’re committed to collaborating with nurses and hcps by: 📖 Providing PSC resources 🔊 Sharing the patient voice ⚕️ Advocating for more Specialist Nurses in hepatology @livernursing @BASLedu #InternationalNursesDay #LetsBeatPSC

Living with PSC is an emotional marathon, not just physical. The theme for Mental Health Awareness Week 2026 is Action. For people with PSC, action can be a small gesture; asking, "How are you feeling today?" Learn more and find ways to help: buff.ly/kfyTAs3 #LetsBeatPSC

At major races you often see big branded charity cheerpoints. As a small charity we can’t always host them, but we have something better: YOU! We’re always amazed by how the PSC community shows up for each other. From hand‑made signs to tireless cheering, you are #TeamPSCSupport.

We’ve all seen marathon buzz lately, but let’s be honest, running 26.2 miles isn't everyone’s idea of fun. Luckily we have charity places at Inflatable events across the UK, and they are exactly as fun as they sound. Find out more: buff.ly/9mHnd9Y 📷️@ukrunningevents

We’ve awarded £49,928 to Dr Edward Jarman (@uniofleicester) to study how PSC transitions into #bileductcancer. Using cutting-edge tech, his team is looking for the ‘cellular signature’ of cancer to help us catch it earlier. ➡️ buff.ly/hCiIJLu #LetsBeatPSC #PSCResearch