The rare liver diseases are important clinical problems and represent areas of real unmet need. Diagnostic difficulties often lead to long delays in disease detection and initiation of specific management. Limitations in the therapies that are available and failure of the current treatment models to adequately deliver those treatments can lead to a risk of illness and death, the need for liver transplantation, ineffective treatments and poor quality of life from the symptoms of disease. There is also a risk of inequality for patients in terms of the quality of treatment offered based not on need but on location. Despite their importance, much of the management for rare liver diseases is undertaken by gastroenterologists without specialist training or knowledge, who, data has shown, have important gaps in their knowledge of advanced management options for complex disease variants. An additional area of need is the care of patients in the transition from paediatric to adult care services, ERN RARE-LIVER aims to address this across all diseases covered. Support information on this transition can be found here

The main objective of ERN RARE-LIVER is to improve the care of all patients with rare liver disease across Europe. We will achieve this both directly through improving care by implementing and updating disease guidelines and indirectly through our research, educational and training activities. We will use a telemedicine system to allow all members to refer complex and high risk patients for case conference. And we will collect key patient outcome data from all centres to monitor quality standards.

The network is coordinated by Prof. Ansgar Lohse and currently includes most of the leading Liver Disease Centres from Europe, with an aim to broaden our membership to ensure that no matter where a patient lives in Europe, they have access to the highest quality of care. We will also develop a platform for conducting collaborative research and innovation activities utilising national, European and international funding.

Disease Working Groups and Subgroups

DWG-1 - Autoimmune Liver Disease:

  • Primary Biliary Cholangitis (PBC, formerly Primary Biliary Cirrhosis)
  • Autoimmune Hepatitis (AIH)
  • Primary Sclerosing Cholangitis (PSC)
  • IgG4 Disease

DWG-2 - Metabolic, Biliary Atresia & Related Disease:

  • Genetic Cholestatic Disease
  • Biliary Atresia
  • Choledochal Cyst
  • Alpha-1-Antitrypsin Liver Disease
  • Wilsons Disease

DWG-3 - Structural Liver Disease:

  • Cystic Liver Disease
  • Vascular Liver Disease
  • Intrahepatic Cholangiocarcinoma

DWG-4 - Liver Disease in Pregnancy: