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 led an international discussion on removing barriers that delay research, ensuring that drug development is built around the practical realities of living with PSC.
Building Partnerships: We joined an AMMF webinar to share specialist transplant knowledge with healthcare professionals to help ensure that clinicians are aware of evolving care options and can better support patients facing transplant and CCA.
Building Partnerships: We presented the latest the PSC Working Group's achievements at the European Reference Network meeting of liver experts to drive collaboration and improve clinical standards worldwide.
Empowering our Community: We signed an international declaration advocating for rare disease research to be a priority in health policy, ensuring long-term funding for PSC.
Improving Care: We initiated collaborations with clinical experts to streamline specialist referral pathways, ensuring patients get the right care at the right time.
Organisational Excellence: We refined our strategic objectives to ensure every penny donated is focused on the most impactful work for our community.
Organisational Excellence: We met with our Board of Trustees to report on work so far this year to ensure the charity continues to meet the highest standards of governance and ensure we are delivering the maximum benefit for people with PSC.
Progressing Research: There are now 55 volunteers in our Patient Panel! The ensures that a diverse range of lived experiences directly shapes future PSC research and care.
Progressing Research: We reviewed research summaries for a pharmaceutical partner to ensure that study results are communicated clearly and transparently to our community.
Progressing Research: We provided patient leadership on a major new steering committee to ensure research into liver complications remains grounded in patient needs.
Progressing Research: The UK PSC Care Guidelines are going to be updated! We joined the national steering committee to update them, ensuring the "rulebook" for how doctors treat PSC is co-written by the patients who live with it.