Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER

• Published in: Orphanet journal of rare diseases Vol. 14; no. 1; p. 169
• Main Authors: Bernts, Lucas H P, Jones, David E J, Kaatee, Marleen M, Lohse, Ansgar W, Schramm, Christoph, Sturm, Ekkehard, Drenth, Joost P H
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 08.07.2019; BioMed Central; BMC
• Subjects: Adults; Analysis; Autoimmune liver disease; ERN; Europe; European reference network; Health aspects; Health care reform; Health Services Accessibility - statistics & numerical data; Hospitals; Humans; Liver Diseases; Medical care; Netherlands; Paediatric liver disease; Pediatrics; Position Statement; Rare Diseases; Rare liver disease; Registries; Structural liver disease; Netherlands; Europe; ERN; European reference network; Autoimmune liver disease; Rare liver disease; Paediatric liver disease; Structural liver disease
• ISSN: 1750-1172; 1750-1172
• DOI: 10.1186/s13023-019-1152-z

The European Reference Network for rare liver diseases (ERN RARE-LIVER) is a Europe-wide network of paediatric and adult hepatologists from expert centres in close collaboration with patient advocates from the various disease-areas covered in our ERN. The ERN is focused on providing more equitable care across Europe and creates a network of both medical specialists and patient experts in rare liver disease. This position paper summarizes the achievements of the first year and plots the route for the near future for ERN RARE-LIVER, as discussed during a strategy meeting that took place 27 and 28 February 2018 in Nijmegen, the Netherlands. ERN RARE-LIVER has established itself as a group with experts, hospitals and patients. One of the tools to improve communication is the clinical patient management system (CPMS) that allows access to expert consultation by European physicians confronted with a patient with rare liver disease. ERN RARE-LIVER will function as the platform to improve healthcare by initiating registries, foster research efforts and coordinate development of clinical guidelines in Europe.