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.

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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases