PSC Support
@pscsupport.bsky.social
Improving the lives of people affected by primary sclerosing cholangitis (PSC) by | Providing Info & Support | Improving Patient Care | Shaping & Funding Research to find effective treatments and a cure | #LetsBeatPSC | www.pscsupport.org.uk
In 2007, there were 0 clinical trials for PSC. In 2026, we have momentum like never before. We’ve moved from hope to measuring quality of life and preventing complications. But the job isn't done until we have a cure for 100% of our community.
➡️ pscsupport.org.uk/donate/
➡️ pscsupport.org.uk/donate/
January 30, 2026 at 10:01 AM
In 2007, there were 0 clinical trials for PSC. In 2026, we have momentum like never before. We’ve moved from hope to measuring quality of life and preventing complications. But the job isn't done until we have a cure for 100% of our community.
➡️ pscsupport.org.uk/donate/
➡️ pscsupport.org.uk/donate/
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
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
January 29, 2026 at 10:01 AM
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
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
You're not alone. Whether you’ve been living with PSC for years, were diagnosed yesterday, or are supporting a loved one, our private FB group is a space where you can ask questions, share your highs (and lows), or simply be seen by people who “get it.” buff.ly/UM7NQGF
January 28, 2026 at 4:30 PM
You're not alone. Whether you’ve been living with PSC for years, were diagnosed yesterday, or are supporting a loved one, our private FB group is a space where you can ask questions, share your highs (and lows), or simply be seen by people who “get it.” buff.ly/UM7NQGF
Watching a loved one live with PSC can feel overwhelming, but you can always help. Melanie & her family showed support for Ryan by tackling an inflatable course! They raised vital funds & had a laugh along the way.
Ready to start your fundraising journey? buff.ly/lbz1D3C
Ready to start your fundraising journey? buff.ly/lbz1D3C
January 27, 2026 at 2:01 PM
Watching a loved one live with PSC can feel overwhelming, but you can always help. Melanie & her family showed support for Ryan by tackling an inflatable course! They raised vital funds & had a laugh along the way.
Ready to start your fundraising journey? buff.ly/lbz1D3C
Ready to start your fundraising journey? buff.ly/lbz1D3C
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
Full details: buff.ly/TVpOLd2
#Mission2030
January 26, 2026 at 11:02 AM
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
Full details: buff.ly/TVpOLd2
#Mission2030
Imagine a jigsaw with crucial pieces missing. That's what PSC research feels like. We're getting closer, but the full picture isn't complete yet. Your support could help us find a vital missing piece in the search for better treatments and a cure.
➡️ pscsupport.org.uk/mission-2030/
➡️ pscsupport.org.uk/mission-2030/
January 25, 2026 at 3:01 PM
Imagine a jigsaw with crucial pieces missing. That's what PSC research feels like. We're getting closer, but the full picture isn't complete yet. Your support could help us find a vital missing piece in the search for better treatments and a cure.
➡️ pscsupport.org.uk/mission-2030/
➡️ pscsupport.org.uk/mission-2030/
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
✉️ [email protected]
#LetsBeatPSC
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
✉️ [email protected]
#LetsBeatPSC
January 24, 2026 at 8:35 AM
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
✉️ [email protected]
#LetsBeatPSC
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
✉️ [email protected]
#LetsBeatPSC
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
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
January 23, 2026 at 10:01 AM
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
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
Great to see our Head of Research Strategy, Martine Walmsley, with Rebecca from @PBCFoundation at a national conference on autoimmune liver diseases today. Partnership is key to progress in rare disease. Together, we are stronger.
#LetsBeatPSC #AutoimmuneLiverDisease #RareDisease
#LetsBeatPSC #AutoimmuneLiverDisease #RareDisease
January 22, 2026 at 1:32 PM
Great to see our Head of Research Strategy, Martine Walmsley, with Rebecca from @PBCFoundation at a national conference on autoimmune liver diseases today. Partnership is key to progress in rare disease. Together, we are stronger.
#LetsBeatPSC #AutoimmuneLiverDisease #RareDisease
#LetsBeatPSC #AutoimmuneLiverDisease #RareDisease
Can PSC impact the health of children conceived after diagnosis? 🧬
The PIP-C study is looking for men with PSC and young adults (16-25) whose fathers have the condition to help answer this vital question.
📍 King's College Hospital, London
Check eligibility here: 👉 pscsupport.org.uk/find-psc-res...
The PIP-C study is looking for men with PSC and young adults (16-25) whose fathers have the condition to help answer this vital question.
📍 King's College Hospital, London
Check eligibility here: 👉 pscsupport.org.uk/find-psc-res...
January 21, 2026 at 9:00 AM
Can PSC impact the health of children conceived after diagnosis? 🧬
The PIP-C study is looking for men with PSC and young adults (16-25) whose fathers have the condition to help answer this vital question.
📍 King's College Hospital, London
Check eligibility here: 👉 pscsupport.org.uk/find-psc-res...
The PIP-C study is looking for men with PSC and young adults (16-25) whose fathers have the condition to help answer this vital question.
📍 King's College Hospital, London
Check eligibility here: 👉 pscsupport.org.uk/find-psc-res...
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
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
January 20, 2026 at 9:02 PM
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
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
Great news! Medway NHS Foundation Trust is the 20th UK service to achieve IQILS Liver accreditation 🏆.
For people with primary sclerosing cholangitis (PSC), this means better access to specialist, coordinated care and higher standards of treatment.
#PSC #LiverDisease #IQILS #Accreditation
For people with primary sclerosing cholangitis (PSC), this means better access to specialist, coordinated care and higher standards of treatment.
#PSC #LiverDisease #IQILS #Accreditation
January 19, 2026 at 10:01 AM
Great news! Medway NHS Foundation Trust is the 20th UK service to achieve IQILS Liver accreditation 🏆.
For people with primary sclerosing cholangitis (PSC), this means better access to specialist, coordinated care and higher standards of treatment.
#PSC #LiverDisease #IQILS #Accreditation
For people with primary sclerosing cholangitis (PSC), this means better access to specialist, coordinated care and higher standards of treatment.
#PSC #LiverDisease #IQILS #Accreditation
Join #TeamPSCSupport and help us fund vital support and research! Whether you run, cycle, or skydive, every mile brings us closer to a cure.
Grab one of our charity places or create your own event!
👉 buff.ly/7qNG1NN #LetsBeatPSC [email protected]
Grab one of our charity places or create your own event!
👉 buff.ly/7qNG1NN #LetsBeatPSC [email protected]
January 18, 2026 at 10:01 AM
Join #TeamPSCSupport and help us fund vital support and research! Whether you run, cycle, or skydive, every mile brings us closer to a cure.
Grab one of our charity places or create your own event!
👉 buff.ly/7qNG1NN #LetsBeatPSC [email protected]
Grab one of our charity places or create your own event!
👉 buff.ly/7qNG1NN #LetsBeatPSC [email protected]
Explaining a rare disease like #PSC can be exhausting. We want to make it easier for you. This graphic simplifies a complex condition:
1️⃣ Immune system attacks bile ducts.
2️⃣ Ducts narrow (strictures), blocking bile flow.
3️⃣ This can lead to infections and liver damage.
🔗 buff.ly/hDbft1a
1️⃣ Immune system attacks bile ducts.
2️⃣ Ducts narrow (strictures), blocking bile flow.
3️⃣ This can lead to infections and liver damage.
🔗 buff.ly/hDbft1a
January 17, 2026 at 9:01 AM
Explaining a rare disease like #PSC can be exhausting. We want to make it easier for you. This graphic simplifies a complex condition:
1️⃣ Immune system attacks bile ducts.
2️⃣ Ducts narrow (strictures), blocking bile flow.
3️⃣ This can lead to infections and liver damage.
🔗 buff.ly/hDbft1a
1️⃣ Immune system attacks bile ducts.
2️⃣ Ducts narrow (strictures), blocking bile flow.
3️⃣ This can lead to infections and liver damage.
🔗 buff.ly/hDbft1a
Finding reliable info on a rare disease shouldn't be a struggle. When Julian was diagnosed with #PSC, his family turned to us for answers. We provide expert-vetted, accurate information for the entire PSC community - patients, family, and friends.
We’re here for you: pscsupport.org.uk #LetsBeatPSC
We’re here for you: pscsupport.org.uk #LetsBeatPSC
January 16, 2026 at 10:00 AM
Finding reliable info on a rare disease shouldn't be a struggle. When Julian was diagnosed with #PSC, his family turned to us for answers. We provide expert-vetted, accurate information for the entire PSC community - patients, family, and friends.
We’re here for you: pscsupport.org.uk #LetsBeatPSC
We’re here for you: pscsupport.org.uk #LetsBeatPSC
Peace of mind, even on the morning walk. Our PSC Cholangitis Alert Card is designed to go wherever you do. Fits in your pocket or on your phone, it’s there to help you and medical teams identify acute cholangitis symptoms quickly. And it's free!
➡️ pscsupport.org.uk/product/psc-... #LetsBeatPSC
➡️ pscsupport.org.uk/product/psc-... #LetsBeatPSC
January 15, 2026 at 6:02 PM
Peace of mind, even on the morning walk. Our PSC Cholangitis Alert Card is designed to go wherever you do. Fits in your pocket or on your phone, it’s there to help you and medical teams identify acute cholangitis symptoms quickly. And it's free!
➡️ pscsupport.org.uk/product/psc-... #LetsBeatPSC
➡️ pscsupport.org.uk/product/psc-... #LetsBeatPSC
A liver transplant impacts more than just your physical health. Many face anxiety and trauma without enough support.
We’re changing that. Are you a UK transplant patient or carer? Help shape future care via this anonymous survey: forms.office.com/e/6UB1uW4ECD
Ends 8 Feb. Please share! #LetsBeatPSC
We’re changing that. Are you a UK transplant patient or carer? Help shape future care via this anonymous survey: forms.office.com/e/6UB1uW4ECD
Ends 8 Feb. Please share! #LetsBeatPSC
January 14, 2026 at 10:00 AM
A liver transplant impacts more than just your physical health. Many face anxiety and trauma without enough support.
We’re changing that. Are you a UK transplant patient or carer? Help shape future care via this anonymous survey: forms.office.com/e/6UB1uW4ECD
Ends 8 Feb. Please share! #LetsBeatPSC
We’re changing that. Are you a UK transplant patient or carer? Help shape future care via this anonymous survey: forms.office.com/e/6UB1uW4ECD
Ends 8 Feb. Please share! #LetsBeatPSC
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
January 13, 2026 at 10:00 AM
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
Good news Monday! Over 100 people have joined the Asp-PSC cancer prevention trial. Do you have #PSC and #IBD? You could help us find answers.
✅ 1 pill a day (aspirin/placebo)
✅ 12 hospital visits over 5 years
✅ 40+ UK sites
#AskAboutAsp & learn more pscsupport.org.uk/find-psc-res... #LetsBeatPSC
✅ 1 pill a day (aspirin/placebo)
✅ 12 hospital visits over 5 years
✅ 40+ UK sites
#AskAboutAsp & learn more pscsupport.org.uk/find-psc-res... #LetsBeatPSC
January 12, 2026 at 9:03 AM
Good news Monday! Over 100 people have joined the Asp-PSC cancer prevention trial. Do you have #PSC and #IBD? You could help us find answers.
✅ 1 pill a day (aspirin/placebo)
✅ 12 hospital visits over 5 years
✅ 40+ UK sites
#AskAboutAsp & learn more pscsupport.org.uk/find-psc-res... #LetsBeatPSC
✅ 1 pill a day (aspirin/placebo)
✅ 12 hospital visits over 5 years
✅ 40+ UK sites
#AskAboutAsp & learn more pscsupport.org.uk/find-psc-res... #LetsBeatPSC
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
#PSCSupport #LetsBeatPSC
January 11, 2026 at 6:01 PM
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
#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
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
January 10, 2026 at 9:07 AM
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
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
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
January 9, 2026 at 2:00 PM
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
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
We are ambitious. But ambition alone is not enough. We turn ambition into action as part of our commitment to improving the lives of everyone affected by PSC. #LetsBeatPSC pscsupport.org.uk
January 8, 2026 at 6:58 PM
We are ambitious. But ambition alone is not enough. We turn ambition into action as part of our commitment to improving the lives of everyone affected by PSC. #LetsBeatPSC pscsupport.org.uk
It’s #NationalDogWalkingMonth! 🐾 For those living with PSC, fatigue is the #1 symptom.
While it feels like the last thing you want to do, a short walk can actually help some people manage energy levels. If you can’t make it out, a sofa cuddle with your pup counts too. 💛
#LetsBeatPSC
While it feels like the last thing you want to do, a short walk can actually help some people manage energy levels. If you can’t make it out, a sofa cuddle with your pup counts too. 💛
#LetsBeatPSC
January 7, 2026 at 3:45 PM
It’s #NationalDogWalkingMonth! 🐾 For those living with PSC, fatigue is the #1 symptom.
While it feels like the last thing you want to do, a short walk can actually help some people manage energy levels. If you can’t make it out, a sofa cuddle with your pup counts too. 💛
#LetsBeatPSC
While it feels like the last thing you want to do, a short walk can actually help some people manage energy levels. If you can’t make it out, a sofa cuddle with your pup counts too. 💛
#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
You are not alone. #PSC #ChronicIllness #LiverDisease #HealthSupport #pscsupportuk #LetsBeatPSC #pscsupport #raredisease #primarysclerosingcholangitis
January 6, 2026 at 6:20 PM
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
You are not alone. #PSC #ChronicIllness #LiverDisease #HealthSupport #pscsupportuk #LetsBeatPSC #pscsupport #raredisease #primarysclerosingcholangitis