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:
The objectives of this framework are further described in the factsheet created by the EURORDIS team.
EURORDIS invites patient representatives, individual patients and family members, clinicians and project managers involved in the ERNs to participate and share this survey to help develop a Patient Partnership Framework for the ERNs.
The survey will take approximately 10 minutes to complete! Do it before the 26th of June 2023!