Latest posts tagged with #letsbeatpsc on Bluesky
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.
pscsupport.enthuse.com/pf/dylan-car...
#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
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
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
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
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
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
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
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
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
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
Cycle from London to Paris for #TeamPSCSupport! 🚲
23-26 September 2026 this fully-supported 4-day ride covers 196 miles of scenic countryside, finishing at the Eiffel Tower! 🗼 Suitable for all abilities.
🔗 buff.ly/b3hJhjd
✉️ fundraising@pscsupport.org.uk
#LetsBeatPSC
