EURORDIS has an important role making heared the patient voice. Concretely, its collaboration with European Reference Networks (ERNs) helps to assure that the projects remain driven by rare disease patients' needs.
Mature ERNs system will leave no person living with a rare disease in uncertainty regarding their diagnosis, care and treatment. According to this, a paper titled "Recommendations to achieve a mature ERN system by 2030" has been developed by EURORDIS, member organizations and ERN ePAG patient advocates.
The paper, and the accompanying Policy Brief, reviews the progress achieved and presents their vision of future of the ERN system. Their vision, focused on four domains, calls for patient organisations and experts to unify within the Networks, and for ERNs to be integrate within healthcare systems across the European Union.
ERNs are now in a critical step to transform the recommendations into concrete measures, projects, actions, tools and processes that will propel the ERNs into a permanent and effective care and research structure to meet the needs of the 30 million people living with a rare disease in Europe. Lets' keep working together!