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:
- Overview of the rare disease patient population healthcare needs that should act as a compass for European and national RD policies.
- 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).
- Analysis of the scope and structure of the ERNs.
- 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.