ERN RARE-LIVER

The ERN RARE-LIVER Youth Panel brings together young people living with rare liver diseases to help shape the network’s work. Their new newsletter offers a window into their perspectives, priorities and activities.

The ERN RARE-LIVER Clinical Exchange Programme offers clinicians and healthcare professionals the opportunity to gain experience and share knowledge across member and partner centres, fostering collaboration and improving care for patients with rare liver diseases.

ERN RARE-LIVER workshops provide a platform for healthcare professionals and experts to exchange knowledge, and discuss current challenges in the field of rare liver diseases. Join the ERN RARE-LIVER Pregnancy Working Group for a dedicated workshop on liver diseases and pregnancy, taking place in Zagreb this September.

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.

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.