How patient organisations can get involved in European Reference Networks (ERNs)

Are you a patient organisation that supports people with rare disease?

You may be interested in getting involved in a European Reference Network (ERN) by providing a patient representative to join one of their Patient Advocacy Groups (ePAGs).

ERNs are networks of Centres of Expertise. They connect experts and researchers who share the same interests in a specific rare disease or highly specialised treatment across the European Union and the countries of the European Economic Area region.

ERNs are healthcare networks that aim to improve access to diagnosis, care and treatment. They do this by sharing their expertise, knowledge and resources to guide care and treatment.

There are 24 ERNs. Each has its own ePAG and focuses on a particular disease area.

Download the Connecting Patients factsheet to find out more about what’s involved and which disease areas are covered.