Over the last 5 years, rare disease patient organisations have designated patient representatives who volunteer to work alongside clinicians in the European Reference Networks (ERNs). The role of these ePAG advocates is to represent the needs of their community by collaborating with the clinicians involved in the ERNs and being a bridge between the Networks and their community. Not an easy task!
Inés Hernando, ERN and Healthcare Director at EURORDIS, talks to Maria Barea and Graham Slater, about their personal story as ePAG advocates, how they became involved in the European Reference Networks, how they are contributing to the work of the Networks and their advice for other people who would like to volunteer.
Read more about patient representation and involvement in the European Reference Networks:https://www.eurordis.org/our-priorities/european-reference-networks/epag/epag/
