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:
Organisational excellence: We simplified our personal data consent process and streamlined how we record patient stories to ensure that the lived experiences of our community are captured accurately and securely to inform future work.
Progressing Research: We coordinated a series of upcoming meetings with international researchers and pharmaceutical companies, which supports better informed decisions for people with PSC, research, or care. This groundwork helps keep PSC research focused on the primary needs of the patient community.
Progressing Research: We reviewed and contributed to scientific abstracts and posters for the upcoming EASL international liver congress, which strengthens the quality of future research for people with PSC, research, or care.
Progressing Research: We engaged with the MHRA to prepare for the upcoming national consultation on rare disease therapies, representing PSC patients in the wider community. Maintaining this direct dialogue ensures our organisation is prepared to respond formally and protect the interests of those living with PSC
Improving Care: We presented about what it is really like to live with PSC to gastroenterologists This first-hand insight equips healthcare professionals to better understand the day-to-day challenges of PSC.
Income Generation: We secured a place in the prestigious Big Give Small Charity Week match-funding campaign, so that we can maximise future donations from our supporters as every donation between 22 and 29 June will be doubled!
Progressing Research: We recruiting for a research and advocacy officer to expand our core team. This additional capacity ensures we can better support scientific studies and represent the patient voice at every level.