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juillet 2019

European Patient Advocacy Groups (ePAGs)

A fact sheet about European Patient Advocacy Groups (ePAGs) and the role they play in bringing together rare disease patient advocates who are actively involved in the work of the European Reference Networks (ERNs). The fact sheet details the mission and role of ePAG advocates, as well as their contribution to the ERNs and examples of key messages that ePAG advocates may wish to use when communicating about their role to different audiences.