Improving care
Progress and Plans at the ERN RARE-LIVER Members’ Meeting 2026
Martine Walmsley shares project updates and future goals from the 2026 Prague members’ meeting.
Read MoreImproving Liver Care for People with PSC
Medway NHS Foundation Trust becomes the 20th UK service to achieve IQILS accreditation.
Read MoreGlobal PSC Awareness Day 2025
The 29th of October 2025, marks Global PSC Awareness Day, a day that unites patients, families, clinicians, and researchers around the world to shine a light on PSC.
This year’s theme, “Turning Hope into Action,” is about more than optimism, it’s about progress. Every day, people affected by PSC, along with the medical and research community, are taking steps toward finding effective treatments and, ultimately, a cure.
Read MoreNLOS: Our Response to the Review
PSC Support welcomes the Review and strongly agrees that changes to the NLOS are required in order to ensure equity, access and transparency for patients. We endorse those recommendations which seek to address the disadvantage that PSC patients face under the NLOS.
Read MoreUse Your Voice to Shape the Future of Liver Transplant Allocation
As the only UK patient organisation dedicated to improving the lives of people affected by PSC we know how important it is for your voices to be heard. That’s why we’re sharing an opportunity for you to have your say in the current review of the National Liver Offering Scheme (NLOS).
Read MoreRepresenting PSC Patients at the ERN RARE-LIVER Annual Meeting
Martine Walmsley, PSC Support Head of Research Strategy, represented patients with rare liver diseases at the ERN RARE-LIVER annual meeting.
Read MoreBreaking News from ICR
Researchers at the Institute of Cancer Research (ICR) and St Mark’s Hospital in London have shared news today that they have developed a test to predict bowel cancer risk in people with inflammatory bowel disease.
Read MoreFirst Participant in FARGO Trial
A PSC Support Trustee has been diagnosed with both PSC and inflammatory bowel disease (IBD). They is receiving weekly poo transplants to treat the conditions in a world first trial.
Read MoreImportant Patient Survey
Have you ever had a cholangitis attack? If so, please take this important survey today.
Read MoreQuality of Your PSC Care
ERN RARE-LIVER survey results have been published. Thank you to the 939 people with PSC who took part in this survey.
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