EURORDIS Patient Partnership Framework for the ERNs

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EURORDIS launched the Patient Partnership Framework for the European Reference Networks (ERNs) – a new guide designed to support the implementation of stronger patient partnership through all strategic and operational phases of the ERNs’ activities.

ERNs are patient-centred networks, where collaboration between health professionals and people living with a rare disease fundamentally drives and shapes the priorities and collaborative activities of these networks, as recommended by the EUCERD recommendations and the Addendum of 2015.

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 a patient partnership 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. Everyone involved in the ERNs can now refer to a common definition of patient partnership and may rely on a common understanding of the main goal that drives this partnership: collaboratively improving healthcare and the lives of people living with a rare or complex condition, taking into consideration their needs and responding to them.

As ERN ReCONNET, we are happy to be part of this Working Group and contribute to its success with our Network Coordinator, Diana Marinello, and our ePAG, Charissa Frank.

For more info, please click here.

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