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EURORDIS launches guide to support patient partnerships across European Reference Networks

noviembre 2023
A graphic of patients and doctors communicating with each other.

EURORDIS-Rare Diseases Europe has today unveiled 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.

Options for collective impact

Emphasising flexibility, the Patient Partnership Framework proposes Nine Guiding Principles. Rather than prescribing specific actions, the Framework fosters an environment conducive to collaboration.

These Nine Guiding Principles concern:

  • Mutual Respect – Open communication and active listening.
  • Teamwork – Joint efforts in setting priorities, identifying gaps, and creating solutions.
  • Learning – Encouraging reciprocal knowledge and exchange for improvement.
  • Professionalism – Respecting the commitments made to contribute to the ERN activities
  • Transparency – Openness about knowledge gaps and partnership challenges and limitations.
  • Continuous Involvement – Steady collaboration throughout ERN initiatives.
  • Complementarity – Recognising diverse scientific, professional, and lived experiences.
  • Clarity of Roles and Responsibilities – Defining and communicating roles clearly.
  • Shared Leadership – Distributed leadership based on expertise and a united approach to network success.

The Framework outlines the key domains of collaborative activity in the ERNs: network strategy and management, healthcare provision, education, clinical research, registries, outreach, and communication. It exemplifies effective partnership through concrete instances across these areas.

It offers users a variety of engagement methods for collaboration throughout a project, such as sharing information, consulting, involving, and co-creating. Users are prompted to consider early on which mix of these methods might be most appropriate and effective at various project stages.

Finally, the guide contains a list of tools and resources that can be used to build an enabling environment for a health collaboration.

By using this Framework, ERNs can tailor their approach to patient collaboration, learning from one another, understanding what can be improved and implementing best practices for a more patient-centred healthcare landscape.

I find it interesting that this guide does not confine us to obligations, it’s a conceptual reflection with a methodical flow. This document can be read as a ‘guide to good practice’. It has a methodological approach of stages. Applying this support guide can help us improve our collective contributions.

Anne Hugon, Project Manager, ERN ITHACA

Using the guide

To ensure that effective patient partnership is truly embedded in ERNs’ activities, decision-making structures, and culture, users of the Framework are encouraged to:

  • Reflect on the extent to which the different activities planned in the ERN are contributing to the overarching goal of the partnership.
  • Consider how to observe and implement the Nine Guiding Principles for a healthy partnership in all the ERN activities.
  • Identify the domain where a given collaborative activity takes place and seek to adopt a consistent partnership approach across all domains and ERN collaborative activities.
  • Outline systematically the different engagement techniques that will be used in all stages of a project, clarifying roles and responsibilities (preparation, implementation, evaluation and feedback).
  • Build an enabling ecosystem and identify what key enablers are missing or need to be enhanced in the ERN.
  • Measure and celebrate the achievements of the partnership.

We hope that this guide will support the ERNs in the years to come to consolidate effective partnerships and equip them for collective impact.

Implementation in the day-to-day management and operations of the European Reference Networks is the next step.

Having reviewed the draft of the Patient Partnership Framework for ERNs, we agree that we can effectively use the Framework to plan, guide, and carry out patient partnerships within our ERN. We recognise various potential approaches to implementing it within our network, aligning with the suggestions outlined in the appendix.

Ikram L’Khssim, Project Manager, ERN CRANIO


The Patient Partnership Framework has been co-created with patient representatives, patients, and clinicians involved in the European Reference Networks.

We would like to pay our thanks to the core team that supported the development of the Framework, which included:

  • Mirthe Klein Haneveld, Clinician-Researcher at ERN ITHACA
  • Simone Louisse, ePAG advocate at ERN GUARD-Heart
  • Olivia Spivack, Project Manager at ERN ERNICA
  • Graham Slater, ePAG advocate at ERN ERNICA

Julien Poulain, Communications Manager