Rare Disease
Global 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 MoreUPDATE: Rifampicin Availability in the UK
Rifampicin is sometimes prescribed to help manage itching (pruritus) in people with PSC and other liver diseases. We have become aware, through our community, partners and the NHS, that there is currently a national shortage of Rifampicin.
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 MoreKieron Dyer’s PSC Journey
Footballing legend Kieron Dyer shares his PSC journey, talking diagnosis, life with PSC, liver transplantation and recovery
Read MoreRare Disease Day 2020
Saturday 29th of February is the 13th international Rare Disease Day.
Read MorePatient Survey on Acceptability of Treatments in AIH
If you have AIH, please take a few moments to help researchers and doctors improve treatment.
Read MoreMedicine Development Training
This week, Maxine, PSC Support’s Programme Development Officer, has been extending her knowledge in this area with EURORDIS, the European patient organisation for rare diseases.
Read MoreRare Disease Day 2019
Raising awareness online and on radio.
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