Help EURORDIS to develop a Patient Partnership Framework for the ERNs!

Submit your answers before 26th of June 2023.

EURORDIS, the non-profit alliance of over 1000 rare disease patient organisations from 74 countries, aims to develop a Patient Partnership Framework for ERNs to formalise a guiding structure for all patient-clinician cooperation, with defined goals and principles:

1. Define a common understanding of patient partnership across the ERNs.
2. Guide people in planning for, conducting and evaluating patient partnerships in the ERNs.
3. Provide a blueprint for patient organisations and other stakeholders partnering in healthcare settings.
4. Provide information for future publications on the topic.

The objectives of this framework are further described in the factsheet created by the EURORDIS team. 

The survey will take approximately 10 minutes to complete! Do it before the 26^th of June 2023!

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