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November 2023

Patient Partnership Framework for ERNs

Patient Partnership Framework for ERNs

The Patient Partnership Framework for the European Reference Networks (ERNs) is a guide designed to support the implementation of stronger patient partnerships through all strategic and operational phases of the ERNs’ activities.

This Framework for the ERNs has been developed with the ambition to guide people in planning for and conducting patient partnerships in the ERNs. It has been developed with insights from patient organisations, patients, health professionals and project managers involved in the ERNs and EURORDIS.

It builds upon the experience accumulated over the past six years on building patient partnerships in the ERNs, on the analysis of similar frameworks developed for healthcare settings, and on the results from a survey which garnered responses from 184 healthcare professionals, patient representatives and project managers across the 24 European Reference Networks (ERNs).

Designed as a practical guide, the Framework aims to support the ERNs to build and maintain a strong culture of patient partnership in their operational activities and strategic decision-making, while duly recognising the contribution of people living with a rare disease in the delivery of the Networks’ objectives.