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June 2021

Rare disease patients’ opinion on the future of rare diseases

The Rare 2030 Survey on the future of rare disease policy was conducted by EURORDIS‐Rare Diseases Europe via the Rare Barometer programme.

The overall objective of this survey was to gather the opinion of rare disease patients and carers on policies that may impact their lives and take these perspectives into account in the Rare 2030 recommendations. 3,998 responses were received worldwide and 3,770 in Europe.