Informe @eurordis sobre protección de datos: Cerca del 100% de pacientes estarían dispuestos a compartir sus datos para fomentar la investigación https://t.co/SoXphwavRX
5,498 followers
558 followers
Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations: https://t.co/cmXEOFKpxi
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Data sharing: the point of view of rare patients. Patients affected by rare diseases are always looking for new treatments and answers to their questions, but what do they think about sharing their data? In 2019 EURORDIS collected…https://t.co/3FoQMD3wWk h
15,586 followers
RT @eurordis: Sandra Courbier presenting on the perspectives of people living with a rare disease in regard to #datasharing at #DHSHelsinki…