Successful ERN RARE-LIVER Quality of Life Workshop in Warsaw

ERN RARE-LIVER recently supported a collaborative workshop to drive scalable implementation of quality of life assessment in clinical and research settings. The workshop, held on 18-19 September 2025 in Warsaw (Poland), focused on people with Primary Sclerosing Cholangitis (PSC)- currently underserved by outcome measures tailored to condition specific experiences. 

Ensuring satisfactory quality of life is an essential aspect of patient experience and outcomes. Quality of life assessment can help inform service design and care delivery and evaluate the impact of interventions. There are currently no validated quality-of-life tools for patients with primary sclerosing cholangitis, although several research teams are working to address this need. This workshop provided a platform to launch a collaboration of relevant stakeholders as as efforts continue towards normalising PSC-specific QoL assessment in research and clinical care setting. 

Over 8 countries – clinicians, researchers, and patients creating a future focused roadmap for equity in relevance and use of patient reported outcomes. The Medical University of Warsaw organised the workshop and funded by ERN RARE-LIVER. This initiative was led by the ERN Quality of Life Working Group and supported by the ERN PSC Working Group.

Patient representatives within ERN RARE-LIVER also took part in the workshop.
Gema Iribar from Albi España shared her impressions:
“The workshop was excellent, with very interesting research presentations and further discussions with the aim of improving the quality of life for people affected by PSC. The event was very well organised, and it was very inspiring to see everyone so eager to work. Congratulations to everyone who made this workshop possible.”