EURORDIS recommendations to achieve a mature ERN system in 2030

In December 2020, EURORDIS and the European Patient Advocacy Group (ePAG) patient advocates published a paper, which reviews the progress achieved so far and presents their vision of a mature European Reference Network (ERN) system.

“Our vision is for a mature ERN system that leaves no person living with a rare disease in uncertainty regarding their diagnosis, care and treatment.“

The paper is divided into 4 different chapters – all of them containing equally important recommendations for driving forward the ERNs during the coming 10 years:

1. Overview of the rare disease patient population healthcare needs that should act as a compass for European and national RD policies.
2. Description of how the different national healthcare models address these needs, with a focus on how to improve the situation regarding the quality of Centres of Expertise (CoEs).
3. Analysis of the scope and structure of the ERNs.
4. Analysis of the progress of ERNs on 4 core functions (care, knowledge sharing, training and research) identifying gaps and providing recommendations to have mature ERNs by 2030.

You can read the full paper, Recommendations to achieve a mature ERN system in 2030, here.

A policy brief has also been developed and can be found here.