A Big Thank You

PSC was first described over 150 years ago, yet there is still no proven medical treatment to slow or cure the condition. As the only UK charity dedicated to helping people living with this rare disease, PSC Support is funding more research than ever before to close this treatment gap.

Thanks to everyone who donated during our recent Small Charity Week Big Give campaign, during which all donations were doubled. You helped smash our target and our final total was over £27k! Thank you so much for your generosity. These vital funds are directly supporting research to unlock scientific breakthroughs towards effective medicines. 

Expert Care Pathways

On 19th June, PSC Support hosted a dedicated roundtable event in London to address how care is delivered across the NHS. Bringing together leading clinicians, researchers, and expert patient voices, the day aimed to build a consensus on an 'ideal', uniform clinical pathway. This is vital if patients are to access PSC treatments when they come.

Why is a standardised pathway needed?

An ideal pathway standardises the patient journey from initial diagnosis through long-term management, ensuring everyone receives consistent, high-quality, and evidence-informed monitoring.

How does it address geographical variability?

Research highlights that care across the UK is patchy, meaning there are pockets of excellence and areas where guideline recommendations are not being followed. Uniform care models reduce postcode lotteries, ensuring protective screenings, such as annual colonoscopies and bone density assessments, are standard nationwide.

How does it support surveillance?

A uniform care pathway guarantees that essential screening protocols for associated conditions, including inflammatory bowel disease, are highlighted across all NHS trusts at each clinic appointment.

Taking the Patient Voice to BSG Live: Expanding the Asp-PSC Trial

In June we attended the BSG Live meeting in Liverpool to connect with general gastroenterologists and inflammatory bowel disease (IBD) nurses outside of specialist transplant centres.

Our main priority was to make new connections and to drive recruitment for the Asp-PSC trial, the largest clinical trial for PSC the UK has ever seen. Because finding enough volunteers for rare disease trials can take years, we are enlisting frontline clinics to become active trial sites, making participation accessible for patients regardless of their postcode.

Please consider finding out more about the Asp-PSC trial, especially if a hospital near you is running the study.

Acute Cholangitis Survey Update

In partnership with PSC Partners, our global acute cholangitis survey has gathered data from 564 adults to map symptom patterns during cholangitis episodes. Acute cholangitis is a serious, potentially dangerous complication caused by infections or blockages in the bile ducts.

Initial results presented at the EASL research congress show that fatigue (90%) and liver pain (84%) are the most common symptoms. Respondents naturally fell into three severity classes (High, Medium, and Low), and findings revealed that a higher overall symptom burden directly predicts longer, more difficult recovery times. The severity of an episode does not relate to the underlying stage of a person’s liver disease, making tracking symptoms vital. Thanks to the ERN RARE-LIVER members and patient groups, the survey remains open in 12 languages for anyone who has experienced an episode.

New Multi-Biomarker Risk Calculator

Predicting disease progression is a common challenge for patients and doctors alike. At the EASL Congress 2026, researchers shared an international multicentre study that developed a highly accurate risk-prediction tool using a combination of blood markers.

By evaluating blood samples from 906 people, scientists created a simplified, practical model using three key blood markers that outperform standard clinical calculators:

1. Enhanced Liver Fibrosis (ELF) test: Measures tissue scarring.
2. Kynurenine-Tryptophan ratio (KTR): Measures immune system inflammation.
3. Pyridoxal 5′-phosphate (PLP): Reflects gut bacterial metabolism and vitamin levels.

This multi-marker approach provides a clearer picture of how a person's condition is likely to progress, helping doctors tailor personalised care and assisting researchers in designing better clinical trials.

Ask the Expert - 12 August

In August we are bringing together international PSC experts, Professor Palak Trivedi, Professor Michael Trauner and Professor Andreas Kremer for a live webinar where research is in terms of getting effective treatments for PSC. Register here.

I hope you can join us!