The ERN RARE-LIVER Members' Meeting 2025, hosted at the Hospital Clínic de Barcelona on January 23-24, brought together experts, researchers, and patient representatives to discuss advancements in rare liver diseases, collaboration within the ERN, and future sustainability.
The meeting opened with a welcome by Drs. Maria Londoño and Joan Carles Garcia Pagan, from the Barcelona team, followed by an update on the network’s progress by Prof. Dr. Ansgar W. Lohse, Director and Chairman at the Department of Medicine University Medical Center Hamburg-Eppendorf.
Enrique Terol, Health Counsellor Permanent Representation of Spain to the EU, presented the broader vision of the ERNs, and discussions on CPMS (Clinical Patient Management System) highlighted recent achievements and future directions.
Breakout workshops explored critical themes such as training and education, support for caregivers, and the sustainability of ERNs, while working groups convened for disease-specific discussions.
The second day featured further working group sessions and plenary discussions addressed: patient pathways and their impact on care, The biopsychosocial approach to managing persistent physical symptoms and the role of patient representatives in shaping ERN initiatives.
The meeting concluded with a presentation of workshop outcomes, followed by a closing summary and farewell remarks by Ansgar W. Lohse.
The ERN RARE-LIVER Members' Meeting 2025 reinforced the network’s commitment to improving care for patients with rare liver diseases through collaboration, research, and innovation.
