RARE-LIVER: A European Reference Network in Rare Hepatological Diseases

ended

"This proposal is to support the creation of a European Reference Network (ERN) in rare hepatological diseases. Liver disease is a major and growing problem in the European population. The expansion in clinical need because of increasing disease impact has not been matched by expansion in the clinical workforce leading to a relative lack of expertise. The challenge is particularly accute in rare liver diseaese; a setting in which Europe leads the world in terms of academic innovation. The ERN model is particularly attractive in the setting of rare liver disease as it will foster the development of ""virtual critical mass"" across European centres with benefits in terms of clinical care deliver, teaching and training and research capacity. Supported by the relevant professional societies (The European Association for the Study of the Liver (EASL) and the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN), the community of clinicians and patient groups interested in rare liver dsiease have come to together to develop a network which is unique in our field. Covering all ranges, from paediatric to adult through transitional care, RARE-LIVER has 3 themes reflecting important disease groupings (Autoimmune Liver Diseease; Metabolic, Biliary Atresia and Related Disease; Structural Liver Disease) with a coherent plan to increase both our disease scope and geographical coverage. We will improve patient care directly through our work on guideline optimisation, care pathway development and the implementation of a model of ""TELE-BOARDS"" with multi-centre discussion of complex and challenging cases. We will also facilitate improvement in diagnostics capcity through development of quality assurance programmes in serology and histopathology, and case referral pathways to support centres lacking diagnostic techology. Our training and research programmes will enhance care delivery through increase in the trained workforce and knowledge respectively."