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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.

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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 22 languages below. 

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases