Progress and Plans at the ERN RARE-LIVER Members’ Meeting 2026
Progress and Plans at the ERN RARE-LIVER Members' Meeting 2026
Prague
12 -14 February 2026
Martine Walmsley, PSC Support Head of Research and Co-Lead of the European Reference Network on Hepatological Diseases (ERN RARE-LIVER) PSC Working Group, is currently attending the network's annual Members' Meeting in Prague. Hosted by the Institute for Clinical and Experimental Medicine (IKEM) at Charles University, this meeting brings together experts to collaborate on improving care for rare liver diseases.
Together with Co-Lead Dr Nora Cazzagon, Martine is presenting a review of the working group's achievements over the last 12 months and outlining strategic priorities for 2026.
What is the ERN RARE-LIVER PSC Working Group?
The working group is a collaborative international team of clinicians and patient representatives dedicated to improving the lives of people with PSC. By sharing expertise across Europe, the group develops resources, clinical guidelines, and research projects that no single country could achieve alone.
What progress was made in 2025?
In the past year, the group successfully delivered several key resources, including:
- Paediatric Information: New PSC leaflets tailored for children, adolescents, and young adults, now available in 20 languages.
- Clinical Resources: The development of PSC leaflets specifically for clinicians to improve disease management.
- Education: A webinar focused on the transition from paediatric to adult care for patients with PSC and inflammatory bowel disease (IBD).
- Quality of Life: A dedicated workshop held in October 2025 to evaluate the impact of PSC on patient wellbeing.
What are the plans for 2026?
The working group is advancing several ongoing and new projects:
- Patient Empowerment: Developing a 'question prompt list' to help patients navigate consultations in non-expert centres.
- Clinical Care: sharing results on our surveys on diet in PSC and launching our acute cholangitis survey in 8 more languages to better understand patient experiences and needs.
- Data and Registries: Continuing work on the PSC-IBD registry to improve long-term data collection.
- Care Pathways: Defining clear patient pathways to ensure equitable access to specialist care.
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:
Building Partnerships: We worked with PSC Partners Seeking a Cure to align our efforts for Rare Disease Day, increasing our global impact for PSC patients
Empowering our Community: We confirmed expert speakers for our 2026 Information Day, ensuring our community can hear the latest medical insights directly from PSC specialists.
Empowering our Community: We met with our dedicated community moderators to ensure our online support spaces remain safe, welcoming, and helpful for everyone.
Improving Care: We progressed a major initiative to standardise PSC care across the UK, advocating for every patient to receive high-quality care.
Organisational Excellence: Our new leadership team met to ensure our resources are focused on activities that have the most impact.
Organisational Excellence: We secured charity places in the 2026 Amsterdam Marathon, expanding our international fundraising opportunities to power future research and support.
Empowering our Community: We filled all of our Great North Run places with amazing fundraisers who are committed to raising crucial funds for our small charity!
Progressing Research: We collaborated with European liver disease experts at ERN-RARE-LIVER to plan PSC-focused sessions for an upcoming international rare disease conference.