Introduction to ERNs and ePAG Patient Advocacy

This document provides a comprehensive overview of the European Reference Networks (ERNs) and the vital role of European Patient Advocacy Groups (ePAGs). It is designed as an induction guide for patient advocates, explaining how these virtual clinical networks connect experts across Europe to improve diagnosis and care for rare and complex diseases.

Inside this file, you will find:

• Core Concepts: An explanation of what ERNs are and how they function as knowledge-sharing hubs.
• Patient Involvement: Insights into the role of ePAG advocates, including the skills and time commitment required for effective representation.
• Support & Resources: Information on how EURORDIS empowers patient partners through training, toolkits, and the Open Academy.
• Practical Guidance: A helpful FAQ section addressing common questions about governance, recruitment, and advocacy tasks.

This resource is essential for anyone looking to understand or participate in the partnership between patients and clinicians within the ERN ecosystem.

You find the document HERE.