Recommendations to achieve a mature ERN system in 2030

December 2020

Our 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 “Recommendations to achieve a mature ERN system by 2030” have been developed by EURORDIS, our 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.

The paper, and the accompanying Policy Brief, reviews progress achieved so far and presents our 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

Read the policy brief

 

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases