PSC Support is the only UK patient organisation dedicated to improving the lives of people affected by primary sclerosing cholangitis (PSC)
We provide patients and families with high-quality, accessible information and the support they need; we collaborate with healthcare providers to improve clinical care; we shape and fund critical research so that we can live in a world without PSC.
Turning Ambition into Action in 2026:
Our Fortnight in Focus
At PSC Support, we want a world without PSC. We work tirelessly behind the scenes to drive research and improve lives. Here is a snapshot of what we've been up to:
Global Research Preparation: We helped develop patient consent documentation for a global PSC research initiative coming to the UK in 2026 so it aligns with UK patient needs.
Representing the Patient Voice: We provided the patient perspective in a panel interview with a major funder regarding a potential new clinical trial for PSC.
Patient-Led Governance: We convened a Patient Panel to review a plans for a new UK study, ensuring the research focuses on the practical needs and safety concerns of people with PSC.
Global Advocacy: We had a late-night meeting to finalise a joint abstract with PSC Partners Seeking a Cure (USA) to present our shared patient survey data at a major European conference.
Regulator Collaboration: We participated in a national workshop with regulators to identify ways to speed up access to new rare disease treatments.
Scientific Leadership: We received excellent editorial feedback on a new textbook chapter about PSC we've been working on with European Reference Network for Rare Liver Diseases experts to improve clinical knowledge of PSC.
Research Governance: We initiated a project to update our research governance protocols and migrate historical research data into our new Grant Management System, ensuring all the research we fund is accurately recorded.
Supporting our Fundraisers: We simplified the process for applying for a Great North Run this year, making it easier for fundraisers and more efficient for PSC Support - win/win!
Help us find a breakthrough in PSC research
At PSC Support we are doing everything we can to find effective treatments for PSC. Check out our new research plans to dramatically increase the research funding we offer and find out how you can help.
Watch the Mission 2030 tree fill with colour as we fund more PSC research.
