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October 2022

EURORDIS’ Position on the European Health Data Space

Sharing health data to advance scientific research and improve clinical practice is of particular importance to the 30 million people living with a rare disease in Europe, where knowledge and expertise are limited, patient populations are geographically dispersed, and health data is scattered. The European Health Data Space Regulation, as proposed by the European Commission, is an unprecedented opportunity for Europe to unlock the potential of health data in Europe for advancing health and research, especially in the field of rare diseases, while implementing robust standards to ensure secure, ethical and responsible data sharing.

EURORDIS-Rare Diseases Europe, alongside its 1,000 patient organisation members, is calling on Europe to ensure that the rights and hopes of the rare disease community are embedded in this legislation. The community calls for the European Health Data Space to:

I. Optimise electronic health records
II. Ensure the ethical use of secondary health data
IIII. Increase digital health literacy
IV. Encourage patient and public partnership