Latest posts tagged with #PSCSupport on Bluesky
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.
pscsupport.enthuse.com/pf/dylan-car...
#LetsBeatPSC #BathHalf #PSCSupport #FundraisingHero #GoodLuckDylan
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
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
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...
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
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
🎙️ 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
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
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
New #PSCSupport research finds high ALP associated with decreased protective genes in the small intestine in #PSC. This suggests the small intestine could be a key target for future treatments, perhaps via the #gutmicrobiome.
Full details: buff.ly/TVpOLd2
#Mission2030
Why does PSC research matter? 🔬
Because Stewart matters. You matter. The PSC community matters.
Help us support more people like Stewart by becoming a monthly donor. Read his story and support our work today: pscsupport.org.uk/stewarts-sto...
#PSCSupport #OrganDonation #letsbeatpsc
The unpredictability of living with PSC. ☕️💨
It’s hard for people to understand when they only see the "Perfect Pour" version of us, but the PSC fatigue and brain fog "spills" are just as real.
Learn more and connect with others: pscsupport.org.uk/connect-with...
#LetsBeatPSC #PSCSupport
A powerful reminder of the daily reality for those with #PSC and other chronic and invisible illnesses. Find out more about PSC fatigue and strategies to manage it on our website. pscsupport.org.uk/fatigue/ #SpoonieLife #InvisibleIllness #PSCSupport
Navigating life with PSC can be challenging. That's why we believe in celebrating every victory, no matter how small.What's ONE small thing you achieved this week? (e.g., made the bed, sent an email, breathed deep). Share yours below.
#PSCSupport #LetsBeatPSC
2025 was a year of progress towards treatments for the PSC community.
Swipe to see the highlights from four major trials: NCA, Nebokitug, Elafibranor, and Volixibat. ➡️
🔗 Full Research Roundup: pscsupport.org.uk/psc-treatmen... . #LetsBeatPSC #PSCSupport #ClinicalTrials #LiverResearch #Hope
Take on the world’s biggest half-marathon for #PSCSupport! 🏅
We have 5 charity places for the 2026 Great North Run. Don’t miss your chance to join #TeamPSCSupport and help us fund life-changing research.
Register your interest today: pscsupport.org.uk/great-north-... #GreatNorthRun #LetsBeatPSC
If you need a safe space to talk about PSC, our Helpline Nurse is here. Book a confidential call, email, or Zoom pscsupport.org.uk/helpline/.
You are not alone. #PSC #ChronicIllness #LiverDisease #HealthSupport #pscsupportuk #LetsBeatPSC #pscsupport #raredisease #primarysclerosingcholangitis
Our vision is a world without PSC. We will not stop until that vision becomes a reality.
If you can, please consider becoming a monthly donor to help us plan our vital work.
pscsupport.enthuse.com/regular-dona... #LetsBeatPSC #PSCSupport
Wishing you all a safe, happy and healthy Christmas from all of us at PSC Support. #LetsBeatPSC #TogetherWeCan #PSCSupport #RareDiseaseCommunity #PSCCommunity
The UK’s Medicines and Healthcare products Regulatory Agency (MHRA) plans to update rules for rare disease therapies, including PSC. PSC Support helped develop these plans. More info and PSC research updates: buff.ly/t60RqPD #LetsBeatPSC #PSCSupport #PSCResearch
You are not alone 💙
Support is available through our private Facebook Group, helpline, website, YouTube videos and social media. Navigating PSC can be challenging, but you don’t have to do it on your own.
➡️ pscsupport.org.uk/get-support/ #LetsBeatPSC #PSCSupport #PSCCommunity
Looking for the perfect stocking stuffer or a little gift that shows you care? 🎁
Our merch store is still open, but don’t wait too long! Order soon to make sure your goodies arrive in time for Christmas.
pscsupport.org.uk/product-cate...
#LetsBeatPSC #PSCMerch #PSCSupport
Living with PSC means #fatigue can drain your battery fast, especially during the festive season. If you get a moment of energy, celebrate it. If you need rest, then rest. There's no "right" way to do Christmas. 🎄 #LetsBeatPSC #PSCSupport #ChronicDisease #RareDisease
#PSCresearch needs to move faster for people like Liyana and her mum, who's been on the transplant list for 15 months. Donate between 2-9 Dec donations and your £20 becomes £40, and with Gift Aid, #PSCSupport receives £45, directly aiding PSC research. 👉 buff.ly/JpF8oQy
MORE Promising news for PSC research!
New SPRING trial data shows Nebokitug remains safe and continues to improve inflammation & scarring after 48 weeks.
Next step: Phase 3 trial 🙌
ℹ️ pscsupport.org.uk/spring-clini...
#LetsBeatPSC #PSCSupport #Nebokitug #LiverResearch #ClinicalTrials
Some studies hint that coffee might be linked to slower PSC progression, though we still need more research to be sure (Sources in thread).
One thing we are sure of: we won’t rest until we find effective PSC treatments.
#PSCSupport #LetsBeatPSC #PSCResearch #PSCcommunity
