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Май 2019

Share and protect our health data!


Rare disease patients’ preferences on data sharing and protection

A graphic report showing the results of the first International survey on rare disease perspectives on data sharing and data protection, together with recommendations derived from the survey. The survey was carried out via Rare Barometer Voices, the EURORDIS survey initiative.

Read the full article

Infographic — International results

This summary infographic shows the collective results of all the 2,013 respondents from 66 countries.

Find a condensed version of the summary infographic in 23 languages below.

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