EURORDIS recently 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.

The overarching goal of patient partnership in the ERNs is to collaboratively improve healthcare and the lives of people living with a rare or complex condition, taking into consideration their needs and responding to them. Through nice guiding principles, the Patient Partnership Framework gives a framework to foster sustainable collaborations:

  • 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.

More information here

Access the Patient Partnership Framework for the European Reference Networks here

At the ERN RITA, we work closely with the RITA Patient Advocacy Group (called RIPAG), which is a European Patient Advocacy Group formed to bring patient representatives together under one umbrella group to contribute to the network’s activities. The ERN Patient Advocacy Groups are an initiative by EURORDIS.

RIPAG is open to all patient organization representatives active in the 4 streams of ERN-RITA. The mission of RIPAG is to safeguard the patient centric profile of the ERN RITA and contribute to the ERN RITA according to the critical roles played by patients and patient organisations, as experts through their experience and co-producers of knowledge in all ERN activities. Access the latest RIPAG Brochure here!