ERN RARE-LIVER

Our mission is to improve the care of rare liver disease patients throughout Europe

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ERN RARE-LIVER Clinical Exchange Programme: Reports from Aachen

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 Clinical Exchange Programme: Reports from Aachen Read More

The European RiTA Consortium Meeting in Barcelona

On September 4–5, 2025, the consortium of the European project RiTA (Porto Sinusoidal Vascular Disease: Risk Stratification & Therapeutic Approaches) held its in-person meeting in Barcelona, bringing together researchers from multiple disciplines and representatives of patient associations.

The European RiTA Consortium Holds In-Person Meeting in Barcelona with Strong Patient Involvement Read More

Transition in Rare Diseases Workshop February 2026 in Ghent

This workshop will convene experts, patients, and stakeholders from across Europe to shape collaborative standards for transitioning rare disease care from paediatric to adult care.

Transition in Rare Diseases Workshop on 27–28 February 2026, Ghent, Belgium Read More

Successful ERN RARE-LIVER Workshop on Quality of Life in Warsaw

A workshop in Warsaw brought together clinicians, researchers, and patient representatives to advance the implementation of quality of life assessment for people with Primary Sclerosing Cholangitis (PSC).

Successful ERN RARE-LIVER Quality of Life Workshop in Warsaw Read More

ERN RARE-LIVER Clinical Exchange Programme: Reports from Hamburg

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 Clinical Exchange Programme: Reports from Hamburg Read More

ERN RARE-LIVER Clinical Exchange Programme: Reports from Leuven

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 Clinical Exchange Programme: Reports from Leuven Read More

Scientific News

More Scientific News

ERN RARE-LIVER Position Paper: Medical Management of Polycystic Liver Disease

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

Medical Management of Polycystic Liver Disease: A Position Statement From the European Reference Network on Hepatological Diseases Read More

EASL Clinical Practice Guidelines on vascular diseases of the liver

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.

EASL Clinical Practice Guidelines on vascular diseases of the liver Read More

New ERN Position Paper: Fatigue in people with Primary Biliary Cholangitis

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

Fatigue in people with primary biliary cholangitis: a position paper from the European Reference Network for Rare Liver Diseases Read More

Multicenter Study published in J Hepatol: LSM and Prognosis in PBC

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.

Prognostic value of liver stiffness measurement vs. biochemical response in primary biliary cholangitis Read More

Management of Wilson disease across Europe: An ERN RARE-LIVER Survey

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.

Management of Wilson disease across Europe: an international physician-oriented survey by the ERN RARE-LIVER group Read More

Efficacy and safety of infliximab in patients with Autoimmune Hepatitis

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

Efficacy and safety of infliximab in patients with Autoimmune Hepatitis Read More

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