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,Joost P H Drenth,Ansgar W Lohse,Ekkehard Sturm,Christoph Schramm

doi:10.1186/s13023-019-1152-z

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.

Highlights

European Reference Networks (ERN) for rare diseases (Fig. 1) have been initiated by the European Commission as a means to achieve equitable care for rare diseases across Europe [1]
We identified the need for a research strategy group or desk consisting of a representation of liver experts who can assist and direct us which research strategy to adopt and which applications we want to support
ERN RARE-LIVER is established as a group and the investments put into collaboration starts to pay off

Summary

Introduction

European Reference Networks (ERN) for rare diseases (Fig. 1) have been initiated by the European Commission as a means to achieve equitable care for rare diseases across Europe [1]. The ERN programme started in earnest in 2017 with the establishment of 24 ERNs within a European legal framework dedicated to rare or low prevalence complex diseases. This brought together more than 300 health care providers (hospitals) and 900 expert teams. The ERN currently covers paediatric and adult care for 12 different rare liver disorders, distributed over three pillars (Fig. 2). Pillar 1 (autoimmune liver disease) includes primary biliary cholangitis (PBC), autoimmune

Objectives

Conclusion