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PSC Support @pscsupport.bsky.social · 2h

It’s #BASL2026 and we're on the ground all week! Why are we here? To fly the PSC flag: building relationships with clinicians & researchers to ensure the patient voice is impossible to ignore. Watch this space & subscribe to stay in the loop: buff.ly/BYvqkzi #PSCSupport #LiverDisease #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 06/10/2026

Huge congratulations and a massive thank you to Shane and Regina, who smashed the Antrim Coast Half Marathon and raised an incredible £1,484 for PSC Support! Explore our places in major events today, and join the team: buff.ly/yemzd3M #PSCSupport #AntrimCoastHalfMarathon #TeamPSCSupport #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 05/10/2026

Mark (PSC Support Head of Ops & Finace and liver recipient) & Liz (Donor family member) represented our community at the @NHSBT Patient & Donor Engagement Policy meeting last week. NHSBT is working to ensure lived experience directly shapes decision-making. #PatientVoices #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 03/10/2026

Clinical definitions do not always capture the daily reality of living with #PSC. The International #PSCTreatment Evidence Survey gathers true real-world lived experiences to build accurate clinical guidance. Help bridge the knowledge gap: buff.ly/xF4UJEX #LetsBeatPSC #RareDisease

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PSC Support @pscsupport.bsky.social · 02/10/2026

PSC affects everyone differently. Some people remain stable for years, others experience progressive liver scarring or face serious complications such as cancer. Dr Ghada Nouairia breaks down results from her study: buff.ly/vK12JRP #LetsBeatPSC #PSCResearch #LiverDisease #RareDisease #PSC

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PSC Support @pscsupport.bsky.social · 01/10/2026

For #NationalPoetryDay, a community member diagnosed with PSC & UC at 13 shares how writing poetry in hospital waiting rooms became a vital outlet. Watch & listen to them read their moving poem set to a sun-dappled backdrop 👇 #PatientVoice #PSCSupport

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PSC Support @pscsupport.bsky.social · 30/09/2026

URGENT: Clinical trial data alone won't get new PSC treatments approved. Regulators (like @MHRAgovuk & FDA) need real-world evidence from patients & caregivers to evaluate new therapies. Your voice is vital to building this evidence. 👇 buff.ly/ifIS3mC #LetsBeatPSC #primarysclerosingcholangitis

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PSC Support @pscsupport.bsky.social · 29/09/2026

One year after being diagnosed with PSC, Amy ran Brighton Marathon raising over £3,000 for #PSCSupport! Inspired by Amy? We have places in Brighton Marathon and lots of other runs! See featured runs on our website or get in touch fundraising@pscsupport.org.uk. pscsupport.org.uk/fundraise/ru...

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PSC Support @pscsupport.bsky.social · 28/09/2026

The MHRA National Commission into the Regulation of AI in Healthcare published its recommendations for a UK regulatory framework. Focus areas: 🔹 Continuous, real-world monitoring of AI tools 🔹 Transparency & patient involvement in policy 🔹 Enhanced MHRA enforcement powers ➡️ buff.ly/tNpV6tG

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PSC Support @pscsupport.bsky.social · 27/09/2026

20 minutes today, could pave the way to finding effective treatments for PSC. This International #PSCTreatment Evidence Survey is collecting critical data that will help shape trial designs, clinical guidelines & research priorities for years to come. ➡️ buff.ly/3KZjqaZ #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 25/09/2026

1/4 "Since my 2023 transplant, I work to share what it's like living through liver failure and support better patient experiences." Mark Chatterley, Head of Operations & Finance @PSCSupportUK This #OrganDonationWeek, read how Mark turns lived experience into advocacy 👇

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PSC Support @pscsupport.bsky.social · 24/09/2026

Regulators need to hear the real, day-to-day impact from patients & families. The #PSCcommunity must stand together to share the reality of #PSC and urgent need for safe treatments that work. Open globally (16+) to patients, carers, and loved ones | 15–20 mins | 100% Anonymous ➡️ buff.ly/qrprQCK

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PSC Support @pscsupport.bsky.social · 23/09/2026

This #OrganDonationWeek, read Daniel's inspiring journey of living with PSC & receiving a life-saving liver transplant 💙 Transplants save lives. 💗 Speak to your loved ones and register your decision with @NHSOrganDonor today. Daniel's story: buff.ly/xfzFM3b #LetsBeatPSC #DonateLife

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PSC Support @pscsupport.bsky.social · 22/09/2026

This #OrganDonationWeek we're sharing Maja's story, from an unexpected PSC diagnosis to a life-saving liver transplant just 2 months ago. ➡️ buff.ly/YewZS4w #LetsBeatPSC #LiverRecipient #OrganDonation @nhsorgandonor

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PSC Support @pscsupport.bsky.social · 21/09/2026

This #OrganDonationWeek, we’re sharing stories from our community 💙 Diagnosed with PSC at 23, Katie went from liver failure at 28 to a second chance at life at 30 thanks to a donor’s kindness. Read her story & find out how to register your decision: buff.ly/3NBiCoo #LetsBeatPSC #OrganDonation

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PSC Support @pscsupport.bsky.social · 20/09/2026

Good luck Gillian and John, who are cycling London to Paris starting 23rd September! Join us in wishing them smooth roads, clear skies, and strong tailwinds! Show support by dropping a 💙 in the comments or donating: pscsupport.enthuse.com/pf/john-gill... #TeamPSCSupport #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 19/09/2026

Registration is OPEN for our PSC Support Info Day! Join us to learn, ask questions, & connect with others. Featuring expert talks from Prof Emma Culver & Dr Deepak Joshi. 📍 London 🗓️ Sat 5 Dec Book your place: buff.ly/gqRVfK8 #LetsBeatPSC #PSC Support

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PSC Support @pscsupport.bsky.social · 18/09/2026

This limited-edition charity calendar in honour of the late landscape photographer Kieran Metcalfe is back. Curated with love by his wife Susie, this special calendar features 12 of Kieran’s breath-taking landscape photographs. Fine out more and order yours here: pscsupport.org.uk/2027-calendar/

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PSC Support @pscsupport.bsky.social · 17/09/2026

PSC is a rare, complex liver disease requiring lifelong, specialist care. We work alongside healthcare professionals & partners like ERN Rare Liver & ELPA to ensure safe, expert-led care for all, and have free resources & links guidelines for HCPs: pscsupport.org.uk/hcps/ #WorldPatientSafetyDay

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PSC Support @pscsupport.bsky.social · 16/09/2026

Living with #PSC often means managing unpredictable energy levels and severe #fatigue, a symptom that isn't always visible to others. If you're navigating fatigue you don't have to figure it out by yourself. For info, guidance & support visit us at pscsupport.org.uk. #ChronicFatigue #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 15/09/2026

At 16, Chloe was diagnosed with PSC and UC. That sparked a passion for understanding the psychological impact of chronic illness, leading her to study Psychology at the U of Northampton and before earning her master’s in Health Psychology from the U of Nottingham. Welcome to #TeamPSCSupport!

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PSC Support @pscsupport.bsky.social · 14/09/2026

Today at 7pm UK time! Still time to register for our free Ask the Expert webinar on PSC & IBD, featuring Dr Rimmer & Dr Chandni Radia + a live Q&A. 🗓️ TONIGHT | ⏰ 7pm UK 📍 Live on Zoom Secure your spot now 👇 us06web.zoom.us/webinar/regi... #LetsBeatPSC #PSCIBD #AskTheExpert

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PSC Support @pscsupport.bsky.social · 13/09/2026

Have you been offered access to a clinical trial for PSC? This short is from a special PSC Support Ask the Expert session with international PSC experts who mapped out the road to effective treatments. Full session & extracts: buff.ly/7n8DkNC #LetsBeatPSC #PSCSupport

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PSC Support @pscsupport.bsky.social · 12/09/2026

With few hills or inclines, Barcelona Marathon course is flat and fast, and suits first time runners, or those going for a PB! Plus it's a great excuse to explore this unique city while raising much needed funds for #PSCSupport. ➡️ runforcharity.com/charity-regi... #LetsBeatPSC #TeamPSCSupport

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PSC Support @pscsupport.bsky.social · 11/09/2026

How do we improve pregnancy care in rare liver disease? Senior research volunteer Maria Richardson represented PSC Support at the ERN RARE-LIVER workshop to help draft new patient care pathways informed by real-world experiences. Read more: www.pscsupport.org.uk/rare-liver-d... #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 10/09/2026

Follow Gemma and Gordon's Great North Run and support them here: ajbellgreatnorthrun2026.enthuse.com/pf/gemma-car... ajbellgreatnorthrun2026.enthuse.com/pf/gordon-sh... #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 10/09/2026

The fact that I’m now training for a half marathon still feels hard to believe. We’re running to raise awareness of PSC, to honour my donor, and to support everyone affected by this disease. Our goal is to one day find a cure for PSC so no one else has to go through what I’ve been through. (3/4)

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PSC Support @pscsupport.bsky.social · 10/09/2026

With a lot of hospital admissions, jaundice and sickness, I waited just over two years until, in August 2025 I finally got the call! The support my family, friends and even strangers have shown has been overwhelming to say the least! (2/4)

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PSC Support @pscsupport.bsky.social · 10/09/2026

This year, my boyfriend Gordon and I are running the Great North Run for PSC Support, exactly one year after I was discharged from hospital following my liver transplant. I was diagnosed with PSC in 2020, and listed for transplant in 2023 after my health took a sudden decline. (1/4) #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 09/09/2026

An optimistic outlook on the Norucholic acid (NCA) being approved by regulators in the near future. This is from a special Ask the Expert session with international PSC experts who mapped out the road to effective treatments. Full session and extracts: buff.ly/7n8DkNC #LetsBeatPSC #PSCSupport

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PSC Support @pscsupport.bsky.social · 08/09/2026

Did you know the Asp-PSC Clinical Trial is one of the largest trials for PSC? With 46 UK hospitals participating, taking part is easier than ever. Speak to your medical team & #AskAboutAsp! More info & hospital list: www.pscsupport.org.uk/find-psc-res... #PSC #ClinicalTrials #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 07/09/2026

Lived experience makes research stronger. Our Patient and Public Involvement and Engagement (PPIE) helped shape a new $13.6M PCORI-funded study on PSC symptom support and mental health. Want to shape future research? Join the #PSCSupport Patient Panel Pool 👇 www.pscsupport.org.uk/pcori-empowe...

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PSC Support @pscsupport.bsky.social · 06/09/2026

When will we have treatments for PSC itch (pruritus)? This extract is from a special PSC Support Ask the Expert session with int'l PSC experts who mapped out the road to effective treatments. Full session and extracts here: buff.ly/7n8DkNC #LetsBeatPSC #PSCSupport

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PSC Support @pscsupport.bsky.social · 05/09/2026

🍂 As we head into autumn, let’s talk about the immune system and PSC! Normally, our immune system shields us from bugs like viruses and bacteria. But in immune-related conditions like PSC, that shield turns inward and damages our own organs. #PSCSupport #PSC (1/3)

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PSC Support @pscsupport.bsky.social · 04/09/2026

Why was less benefit seen when people took Urso (UDCA) on the Norucholic Acid (NCA) trial? This extract is from a special Ask the Expert session with international PSC experts. Full session & extracts here: buff.ly/GvnxfNl #LetsBeatPSC #PSCSupport #LiverTreatment #LiverResearch

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PSC Support @pscsupport.bsky.social · 03/09/2026

"The challenge I set myself of 100,000 steps per week for the month of July is minor compared to the challenge my niece Melly faces on a daily basis." Thanks to Marianne’s dedication and the generosity of her supporters, she raised over £1,300 to help us continue our work. Thank you! #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 02/09/2026

Did you know around 8 in 10 people living with PSC also have IBD? We’re bringing together two expert speakers for our next Ask the Expert webinar to give you clear, evidence-based answers. 🔗 Register today to secure your spot: buff.ly/ej91IUV #LetsBeatPSC #PSCIBD #PSCresearch

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PSC Support @pscsupport.bsky.social · 01/09/2026

IT’S LIVE! Now through 28 Sept, every new monthly donation set up via our Big Give page will be DOUBLED for the first three months. Whether it's £1 or £500, every gift makes a difference. It takes 2mins, and you can cancel anytime. ➡️https://buff.ly/AQJ6Fln #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 31/08/2026

Happy Bank Holiday Monday! Today is the perfect excuse to squeeze every last drop out of summer: 🌳 Step outside for a gentle walk and some fresh air 🍦 Enjoy a well-deserved treat 💙 Make special memories with your favourite people #PSCSupport #LetsBeatPSC #PSCAwareness

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PSC Support @pscsupport.bsky.social · 30/08/2026

Are fatigue meds on the horizon for PSC? This extract is from a special Ask the Expert session with international PSC experts. Full session & extracts here: buff.ly/GvnxfNl #LetsBeatPSC #PSCSupport #LiverTreatment #LiverResearch #PSCFatigue

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PSC Support @pscsupport.bsky.social · 28/08/2026

Andy and his donor liver have spent over 20 years together. Twenty years with his wife, family, friends and community. Many thanks to Andy who shared this honest account of his life with PSC and the opportunities his transplant brought. ➡️ buff.ly/os93mbc #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 27/08/2026

What causes pain in PSC? 🤔 This extract is from a special Ask the Expert session with international PSC experts. Full session & extracts here: buff.ly/GvnxfNl #LetsBeatPSC #PSCSupport #LiverTreatment #LiverResearch #primarysclerosingcholangitis

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PSC Support @pscsupport.bsky.social · 26/08/2026

Flush the taboo about poo! 💩 The #FARGO trial is looking at gut health & PSC; 38 people have joined and 28 have finished their treatments! Want to join them? We’re still recruiting in Oxford, Birmingham & London (King's, Royal Free, St Mark's). pscsupport.org.uk/find-psc-res... 🔬#LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 25/08/2026

Finding effective treatments for PSC takes years of sustained commitment and reliable funding. That’s why our Big Give Monthly Giving campaign is so exciting! From 1–28 Sept any new monthly gift set up through our Big Give page will be matched for 3 months: buff.ly/AGvqu1e #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 24/08/2026

💗 #OrganDonationWeek is just 1 month away & we need your voice 💗 Share your story as a recipient, donor, loved one or someone concerned you'll need a transplant one day. We want to hear from you! 📩 emily@pscsupport.org.uk. Pics, words, videos - whatever suits you! #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 23/08/2026

Save the Date! 🎄 Our next in-person PSC Support Info Day is in London on 5th Dec! Connect with PSC experts, join interactive sessions, and meet others who truly 'get it.' Plus, festive London makes for a great trip! Details & registration coming soon ➡️ buff.ly/EttuvQC #LetsBeatPSC

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PSC Support @pscsupport.bsky.social · 22/08/2026

Fatigue in PSC is complex and impacts daily life. A biopsychosocial approach examines how biological, psychological, and social factors interact to help shape better management strategies. Read more: pscsupport.org.uk/find-a-cure/...

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PSC Support @pscsupport.bsky.social · 21/08/2026

In a complex disease like PSC, it is clear there will not be a single magic bullet. This extract is from a special Ask the Expert session with international PSC experts. Full session & extracts here: buff.ly/GvnxfNl #LetsBeatPSC #PSCSupport #LiverTreatment #LiverResearch

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PSC Support @pscsupport.bsky.social · 20/08/2026

Ever thought of your gut as a garden? Microbes are like plants & helpful bugs keeping everything in balance. They digest food, make vitamins and keep harmful bacteria at bay. If things get out of balance, it’s like weeds taking over. ➡️ buff.ly/DH7MDl2 #Fargo #LetsBeatPSC #ClinicalTrials #FMT

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PSC Support @pscsupport.bsky.social · 19/08/2026

NEW VIDEO RELEASE! Our latest Ask the Expert session features 3 leading international specialists ("PSC Royalty"!) for an in-depth discussion on PSC. Looking for lay summaries? Check the video description on YouTube for bite-sized edits! www.youtube.com/watch?v=2-uS... #LetsBeatPSC

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