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
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
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
February 17, 2026 at 8:01 AM
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
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
Read the full report:
🔗 pscsupport.org.uk/progress-and...
#PSCSupport #ERNRareLiver #RareDisease #PatientAdvocacy #LetsBeatPSC
February 16, 2026 at 9:37 AM
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
Read the full report:
🔗 pscsupport.org.uk/progress-and...
#PSCSupport #ERNRareLiver #RareDisease #PatientAdvocacy #LetsBeatPSC
"PSC is a tough journey, and my friend, Kai, has faced it with unwavering courage. PSC Support has been a beacon of hope, offering invaluable support, resources, and funding for research to improve the lives of those affected by this disease." Thank you Maria and #TeamPSCSupport
February 15, 2026 at 9:00 AM
"PSC is a tough journey, and my friend, Kai, has faced it with unwavering courage. PSC Support has been a beacon of hope, offering invaluable support, resources, and funding for research to improve the lives of those affected by this disease." Thank you Maria and #TeamPSCSupport
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
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
February 14, 2026 at 9:00 AM
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
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
🟣 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
February 13, 2026 at 9:01 AM
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
🟣 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...
Full update: pscsupport.org.uk/leadership-u...
February 12, 2026 at 1:00 PM
📣 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...
Full update: pscsupport.org.uk/leadership-u...
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
Quote tweet or reply with your thoughts #LetsBeatPSC
February 11, 2026 at 10:00 AM
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
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
#LetsBeatPSC
February 10, 2026 at 7:01 PM
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
#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
Trial info 👉 clinicaltrials.gov/study/NCT073...
#ClinicalTrials
February 9, 2026 at 4:01 PM
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
Trial info 👉 clinicaltrials.gov/study/NCT073...
#ClinicalTrials
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
#LiverTransplant #PSCSupport #PatientVoice #UKODTRN
February 8, 2026 at 7:00 PM
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
#LiverTransplant #PSCSupport #PatientVoice #UKODTRN
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? 💌 [email protected] @rarediseasedayofficial #LetsBeatPSC
Ready to share? 💌 [email protected] @rarediseasedayofficial #LetsBeatPSC
February 7, 2026 at 6:00 PM
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? 💌 [email protected] @rarediseasedayofficial #LetsBeatPSC
Ready to share? 💌 [email protected] @rarediseasedayofficial #LetsBeatPSC
Health literacy is key in the rare disease community. We bridge the gap between complex science and patient understanding by providing jargon-free research summaries . Read about new research looking at a potential link between Epstein-Barr virus and PSC. buff.ly/0Cl4lxE
February 6, 2026 at 11:01 PM
Health literacy is key in the rare disease community. We bridge the gap between complex science and patient understanding by providing jargon-free research summaries . Read about new research looking at a potential link between Epstein-Barr virus and PSC. buff.ly/0Cl4lxE
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
#LetsBeatPSC #PSCSupport #RareDisease #ChronicIllness #HelplinesAwarenessDay #LiverDisease #NursingSupport @HelplinesUK
February 5, 2026 at 8:13 PM
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
#LetsBeatPSC #PSCSupport #RareDisease #ChronicIllness #HelplinesAwarenessDay #LiverDisease #NursingSupport @HelplinesUK
🧬 PSC vs. PBC: What’s the difference?
They might sound similar, but Primary Sclerosing Cholangitis and Primary Biliary Cholangitis are distinct conditions with different paths. Understanding the differences is key to getting the right care & support 👉️ buff.ly/X5TGSzg
They might sound similar, but Primary Sclerosing Cholangitis and Primary Biliary Cholangitis are distinct conditions with different paths. Understanding the differences is key to getting the right care & support 👉️ buff.ly/X5TGSzg
February 4, 2026 at 10:01 AM
🧬 PSC vs. PBC: What’s the difference?
They might sound similar, but Primary Sclerosing Cholangitis and Primary Biliary Cholangitis are distinct conditions with different paths. Understanding the differences is key to getting the right care & support 👉️ buff.ly/X5TGSzg
They might sound similar, but Primary Sclerosing Cholangitis and Primary Biliary Cholangitis are distinct conditions with different paths. Understanding the differences is key to getting the right care & support 👉️ buff.ly/X5TGSzg
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
Register: us02web.zoom.us/webinar/regi...
#PSCSupport #RareDisease #LetsBeatPSC
February 3, 2026 at 10:00 AM
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
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
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
February 2, 2026 at 2:40 PM
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
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
Our funded international research, led by Prof Bañales & Dr Rodrigues, is making significant progress. They have analysed 800+ patient samples, with biomarkers continuing to show promise in identifying those at higher risk and with early-stage cancer.
👉️ pscsupport.org.uk/research-wev... #Mission2030
👉️ pscsupport.org.uk/research-wev... #Mission2030
February 1, 2026 at 9:03 AM
Our funded international research, led by Prof Bañales & Dr Rodrigues, is making significant progress. They have analysed 800+ patient samples, with biomarkers continuing to show promise in identifying those at higher risk and with early-stage cancer.
👉️ pscsupport.org.uk/research-wev... #Mission2030
👉️ pscsupport.org.uk/research-wev... #Mission2030
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
👉 runforcharity.com/charity-land...
#AmsterdamMarathon #PSCSupport #LetsBeatPSC
January 31, 2026 at 9:01 AM
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
👉 runforcharity.com/charity-land...
#AmsterdamMarathon #PSCSupport #LetsBeatPSC
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