EURORDIS has introduced the Patient Partnership Framework for the European Reference Networks (ERNs). This innovative guide is crafted to bolster the integration of robust patient partnerships across all stages of ERN activities. Drawing on the accumulated expertise of EURORDIS and the ERNs over the past six years, as well as insights from analogous frameworks in healthcare settings and input from a diverse range of stakeholders through a survey, the framework is a comprehensive tool.
The ERNs inherently prioritise patients, with collaboration between healthcare professionals and the rare disease community serving as a central driver for their priorities and initiatives. The framework is designed to offer guidance on planning and executing partnerships within the context of the networks, fostering the establishment and sustenance of a robust culture of patient collaboration. This initiative aims to assist the ERNs in realising their overarching objective of collectively enhancing healthcare for individuals grappling with rare or complex conditions.
