In this episode of ERNs on Air, Ines Hernando (ERN & Healthcare Director, EURORDIS) is joined by Olivia Spivack (ERN Implementation Coordinator at ERN ERNICA, and researcher) and Mirthe Klein Haneveld (Researcher, ERN ITHACA) to discuss the Patient Partnership Framework for European Reference Networks. They explain why the framework was developed, its core elements and enablers, and practical tools to capture patient voices. The conversation also addresses practical challenges – such as ensuring diversity and setting up support structures for ePAG representatives.Explore the Patient Partnership Framework for ERNs:https://www.eurordis.org/publications/patient-partnership-framework-for-erns/Read the scoping review co-authored by Mirthe Klein Haneveld and Olivia Spivack:https://pubmed.ncbi.nlm.nih.gov/39708237/

Ver todos los episodios