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

Lucas H. P. Bernts,
David E. J. Jones,
Marleen M. Kaatee,
Ansgar W. Lohse,
Christoph Schramm,
Ekkehard Sturm and
Joost P. H. DrenthEmail author

Orphanet Journal of Rare Diseases201914:169

https://doi.org/10.1186/s13023-019-1152-z

Received: 6 July 2018
Accepted: 28 June 2019
Published: 8 July 2019

Abstract

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.