EURORDIS Vision for a Mature ERN System by 2030

EURORDIS have published their vision for a mature ERN system that leaves no person living with a rare disease in uncertainty regarding their diagnosis, care and treatment. The recommendations were developed in collaboration with their member organisations and ERN ePAG patient advocates.

The paper, and the accompanying Policy Brief, reviews progress achieved so far, presents the vision of a mature ERN system, calls for patient organisations and experts to unify within the Networks, and for ERNs to be embedded within healthcare systems across the European Union.