23 May 2023
Recap of the Heritable Thoracic Aortic Diseases Spring Meeting
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:
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.