CONTACT
European Reference Networks Resource Kit
-
Open linkBooklet: European Reference Networks. A success story for patients living with a rare disease
Booklet published by the European Commission celebrating the dedication and expertise of European Reference Networks that make a tangible difference in the lives of rare disease patients and their families.
-
Open linkFactsheet: EU delivering on rare diseases for patients and families
Factsheet on what the Commission is focusing on for the reinforcing European action on rare diseases, such as the creation of the 24 ERNs.
-
Open linkFactsheet: How the European Commission works on Rare Diseases and the European Reference Networks (ERNs)
The ERNs represent a key element of the European Health Union in rare diseases, working on network coordination, patients’ registries, training, clinical practice guidelines and communication to raise awareness on rare diseases and ERNs activities.
-
Open linkEuropean Reference Networks - 2023 presentation booklet
Latest edition. European Commission: Directorate-General for Health and Food Safety, European Reference Networks – Working for patients with rare, low-prevalence and complex diseases – Share, care, cure, Publications Office of the European Union, 2023,
-
Open linkPatient Guide to the 5-Year Evaluation of the European Reference Networks
EURORDIS Patient Guide based on the ERN Evaluation Manual & Toolkit specifically to support patient representatives who are active in the ERNs to understand their role and contribution to the evaluation process of the Networks.
-
Download documentEuropean Reference Networks Logo User Guide
Guidelines for the use of the official logo of the ERNs. Colour Palette., font usage, etc.
