ERN RARE-LIVER

At the EASL Congress 2026 in Barcelona, members of the ERN RARE-LIVER Youth Panel shared their perspectives on the needs of young people living with rare liver diseases, highlighting the importance of patient-centred care and effective communication between patients and healthcare professionals.

At ESPGHAN 2026 in Lille, ERN RARE-LIVER will be present with a booth and available for meetings and discussions throughout the congress. The network will also continue key discussions within the paediatric community and ongoing work.

ERN RARE-LIVER took part in the EASL Congress 2026 in Barcelona, meeting with members and partners at its booth and contributing to several programme sessions. Highlights included discussions on patient involvement in research and care, as well as the ERN RARE-LIVER Reception.

The conference brought together representatives from the European Commission, National Contact Points (NCPs), regional cross‑border initiatives, and the European Reference Networks (ERNs) to discuss current achievements and future challenges in cross-border healthcare.

On 27 and 28 February, ERN RARE‑LIVER coordinated the first ERN overarching workshop on Healthcare Transition in Rare Diseases in Ghent. The event brought together young patient representatives and healthcare providers from 22 ERNs to address the need for safe, structured and person‑centred transition from paediatric to adult care.

ERN RARE-LIVER Coordinator Professor Ansgar W. Lohse visited the Gastroenterology Clinic at Kauno Klinikos Hospital of the Lithuanian University of Health Sciences, where experts discussed the latest advances and collaboration in the care of rare liver disease patients.

A new ERN RARE-LIVER position paper presents expert consensus on the use of somatostatin analogues in the management of polycystic liver disease.

A new 2025 EASL guideline outlines expert recommendations for the diagnosis and management of major vascular liver diseases, emphasising early detection, stepwise treatment strategies, and multidisciplinary care.

A systematic review by ERN RARE-LIVER outlines current evidence and clinical recommendations for managing fatigue in PBC patients.

A new multicentre study evaluates the prognostic value of liver stiffness measurement in PBC, highlighting its role in predicting hepatic decompensation independently of biochemical response.

A European survey by the ERN RARE-LIVER examined how Wilson disease is managed across 58 specialist centres and highlighted areas of variability in care.

This multicenter retrospective study evaluated infliximab in 42 patients with autoimmune hepatitis (AIH) unresponsive to standard therapies or with concurrent autoimmune diseases.