Views wanted on sharing health information - EURORDIS survey
How much control should patients retain over their health information?
Share your opinion by responding to EURORDIS short survey: https://www.sphinxonline.com/SurveyServer/s/EURORDIS75/EN_DataPS_ext/questionnaire.htm
This survey will help EURORDIS, a European non-profit and non- governmental patient-driven alliance of patient organisations, to better understand the opinion and experience of people living with a rare disease and their families in the field of data protection, data sharing.
The survey will take about 20 minutes to answer and is available in different languages.