European Reference Networks Resource Kit

Booklet: 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 link

Factsheet: 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 link

Factsheet: 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 link

European 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 link

Patient Partnership Hub

Designed to support the planning and implementation of patient partnerships within healthcare networks, especially in European Reference Networks (ERNs). The Hub provides a variety of valuable tools, guides, best practices, and templates to enhance patient involvement in healthcare.

Open link

Patient 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.

Open link