New research update! ๐ข The SABR-PSC pilot study shows that brodalumab is safe and well-tolerated in people with primary sclerosing cholangitis (PSC). No new safety concerns or IBD flare-ups reported. A great first step toward larger trials โน๏ธ pscsupport.org.uk/sabr-psc-tri... #LetsBeatPSC
Posts by PSC Support
We're in Edinburgh! Mark Chatterley (Head of Ops & Finance) is at the #PBCConference learning from @PBCFoundation's best practice. Mark is pictured with Antonija (Croatia), who will soon take over from our Martine as the PSC Working Group Co-Lead for the ERN Rare Liver network.
We all experience tiredness at times, which can be relieved by sleep and rest. But fatigue different. It is overwhelming tiredness that isn't relieved by sleep or rest.
Learn more about this PSC symptom and strategies to manage it: pscsupport.org.uk/fatigue/ #PSCFatigue #LetsBeatPSC
This #WorldLiverDay join us in sharing information about PSC, a rare immune-mediated liver disease that affects the bile ducts and liver. pscsupport.org.uk #LetsBeatPSC
GOOD LUCK to Becky at the #GreatBirminghamRun next month! ๐ Taking on a her 4th half marathon is no small feat, but she's doing it for a very special reason - supporting her partner, Kaine and raising much-needed funds for #PSCSupport. buff.ly/7I8mM7a #LetsBeatPSC
For most in our community, PSC is an #invisibleillness. But just because we look ok, doesn't mean we are. If someone with PSC tells you they are unwell, the most powerful thing you can do is ๐๐๐ฅ๐ข๐๐ฏ๐ ๐ญ๐ก๐๐ฆ. Find out more about living with PSC: buff.ly/MO9Twgu
It's just hair right? Nope. It's so much more than just hair. Itโs a bold gesture of support and a boost for the PSC community. Join us in the comments to wish Abbie luck for her big shave in May or support her here: buff.ly/6KSxYL5
#BraveTheShave #LetsBeatPSC
Results from the Phase 2 ritivixibat (A3907) study in #PSC are now available. Data from @IpsenGroup indicates the drug was generally well-tolerated, with no serious side effects reported. The trial ended early due to recruitment challenges.
โน๏ธ buff.ly/U8vFjiT #LetsBeatPSC
AMAZING NEWS! Following Dr Joshi's video last week, the Loizias Foundation has generously offered to MATCH every donation up to his ยฃ5,000 target! ๐คฉ
That means ยฃ1 becomes ยฃ2! A huge thank you to the foundation.
Donate here: 2026tcslondonmarathon.enthuse.com/pf/djoshi-4e... #LetsBeatPSC #PSCSupport
As the days get longer and the world seems to "spring" into action, itโs okay if your energy levels aren't matching the season. Fatigue is one of the most common symptoms of PSC, and it can be incredibly frustrating. Learn more pscsupport.org.uk/living-with-... #PSC #Fatigue #LetsBeatPSC
Good luck to our incredible #TeamPSCSupport taking on @ParisMarathon today! We're so proud to have you represent #PSCSupport in Paris. Join us in wishing them good luck!
If you've ever considered running for us, check this out:
๐ buff.ly/tf4QSfS #LetsBeatPSC
At 19, Amyโs world was turned upside down by a PSC diagnosis. Instead of letting it stop her, sheโs proving she is more than a diagnosis by taking on #BrightonMarathon this weekend! Read her journey and wish her luck: pscsupport.org.uk/amy/ #LetsBeatPSC #TeamPSCSupport
How does gallbladder removal affect PSC? Weโre working with PSC Partners and leading researchers to find out, but we need your help! To improve PSC care, we MUST back up our claims with evidence. Your views help us do that.
Take the surveyโก๏ธ forms.gle/SmZsN8YUS9tx... #LetsBeatPSC
This #ThankYouThursday we're highlighting Dr. Joshi who's a vital part of our community. From joining our webinars to taking on the 2026 #LondonMarathon for #TeamPSCSupport! Watch his training update here! ๐2026tcslondonmarathon.enthuse.com/pf/djoshi-4e88d #RareDisease #LetsBeatPSC
Order or download our #PSCAlertCard to keep in your wallet or purse to help understand your symptoms and make treatment decisions with your GP or emergency medical team if #acutecholangitis (also called #bacterialcholangitis) is suspected. pscsupport.org.uk/product/psc-... #LetsBeatPSC
The #WorldHealthDay2026 theme is "Together for Health: Stand with Science."
We stand with science by:
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Providing info based on quality research & best practice.
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Funding scientific research for breakthrough treatments & a cure.
Learn more buff.ly/cDMLd8q #LetsBeatPSC
Save the date! Live PSC Q&A with Dr. Deepak Joshi.
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Sat 2 May
๐ 1 PM (UK time)
๐ Zoom
๐ Register Now: buff.ly/9IZxH7A
Dr. Joshi is pulling double duty this month, heโs also running the #LondonMarathon for #TeamPSCSupport! ๐โโ๏ธ
#AskTheExpert #LetsBeatPSC #PSC
We're delighted to introduce Meeya, one of our fantastic fundraisers taking on #LondonMarathon2026 for us! Inspired by her stepdad and England footballing legend, Kieron Dyer, Meeya completed Ipswich Half two years ago & caught the running bug. โก๏ธ 2026tcslondonmarathon.enthuse.com/pf/meeya-ham...
Small charity, BIG impact! Here is what weโve been up to recently:
๐ Contributed to a new medical textbook
๐คฐ Developing a PSC pregnancy research registry
๐ข Advocating for new treatments at the SMC
โ๏ธ Updating national clinical guidelines
Support our work: buff.ly/o529Slz
Good news! And we donโt just mean that it's a Bank Holiday weekend. ๐
The PiSCATIN study in Sweden has reached full recruitment! Weโre proud to help fund this research. Thank you to all the volunteers who made this possible. Learn more ๐ buff.ly/5CQ7k6e
#LetsBeatPSC
Our funded project, 'Characterising genetic changes in bile ducts,' has reached key milestones! โ
Patient samples successfully collected โ
A complex 3D bile duct model is established. Now, critical analysis (DNA sequencing) is underway ๐
โก๏ธ pscsupport.org.uk/research-wev... #Mission2030
PSC is no joke. It's hard to pronounce and even harder to explain.
Share this graphic to help raise awareness and understanding of this rare, complex disease.
โน๏ธ pscsupport.org.uk/all-about-psc/
#LetsBeatPSC #PSCSupport #RareDisease #LiverDisease #ChronicIllness #primarysclerosingcholangitis
Living with PSC can feel like learning a second language. Itโs okay to feel overwhelmed by what youโre told in the clinic room. Our specialist Helpline Nurse, Loren, is here for you.๐ Book a slot: buff.ly/dc8o4zR
#PSCSupport #RareDisease #LetsBeatPSC @HelplinesUK
Coffee? โ๏ธ Healthy breakfast? โ๏ธ Workspace ready? โ๏ธ
Living with PSC can mean being hyper-aware of how we start our day. We aren't just getting ready; we're managing symptoms, protecting our energy, and giving ourselves the best chance to thrive. What's your morning routine?
We understand that discussing Wills can feel daunting, which is why weโve partnered with the National Free Wills Network to offer a free, easy-to-use service to help the PSC community gain peace of mind with confidence. Order your free wills pack today: www.pscsupport.org.uk/wills/ #LetsBeatPSC
Itโs been a month since #RareDiseaseDay, and while the hashtags might have slowed down, our community never does! Huge thank you to Jenny, Sophie and their entire community for raising awareness of PSC and vital funds for the PSC community.
#PSCSupport #LetsBeatPSC #RareDiseaseAwareness
Whatever you need to navigate PSC, weโve got your back.
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Specialist Helpline Nurse
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Medically-verified info
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Private peer support group
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Live webinars & In-person events
Connect with the #PSCcommunity and learn more about available support.
โก๏ธ buff.ly/yVoqGyW
There are currently 5 PSC trials/studies recruiting. Could you be a match?
Claire has taken part in 8 trials to help find a cure. Read why she does it: pscsupport.org.uk/psc-and-me/c...
Have you taken part in a trial? Get in touch to share your experience. hello@pscsupport.org.uk #LetsBeatPSC
New Clues to #PSCProgression. Our funded research is mapping PSC liver tissue with advanced technology to find unique immune differences (Kupffer/CD8 T cells) & early signs of disease. Goal: better, earlier detection.
Full update: pscsupport.org.uk/research-wev...
#Mission2030 #PSCResearch
The journey to a PSC diagnosis is rarely a straight line.
There's no single diagnostic blood test for PSC. Doctors need to piece together info from your medical history, blood tests, symptoms, colonoscopy and scans to make a diagnosis. โน๏ธ buff.ly/6dzfdk6
#LetsBeatPSC