The “Recommendations to achieve a mature ERN system by 2030” have been developed by EURORDIS, their member organisations and ERN ePAG patient advocates. EURORDIS has played a critical role in amplifying the patient voice and creating the conditions for engagement within ERNs so that their activities remain driven by patients’ needs. Their vision is for a mature European Reference Network (ERN) system that leaves no person living with a rare disease in uncertainty regarding their diagnosis, care and treatment.
The paper, and the accompanying Policy Brief, reviews progress achieved so far and presents EURORDIS’ vision of a mature ERN system. It calls for patient organisations and experts to unify within the Networks, and for ERNs to be embedded within healthcare systems across the European Union.
Read the full paper and policy brief here.