EURORDIS Rare Barometer Programme

At the heart of the EURORDIS Rare Barometer Programme is the idea that the advocacy work of EURORDIS and its members should continue to be increasingly based on patient perspectives.

At EURORDIS, requests for patient perspectives in health, research and social policy-making are on the rise as the benefits associated with evidence-based programmes or policies are being increasingly recognised and required by all stakeholders. To best respond to our growing advocacy role and achieve a high quality evidence-base from people living with a rare disease, the EURORDIS Rare Barometer Programme will rely heavily on patient engagement to inform sound policy from the patient perspective by carrying out surveys, focus groups, individual face-to-face interviews and other opinion-gathering methods to gain firsthand feedback from patients.

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