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January 08 2018

New Eurordis Rare Barometer Voices Survey

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Eurordis’ Rare Barometer Voices has a new survey entitled “Sharing my health information: why, how, and with whom?” that aims to collect the thoughts of patients (and/or their family members/carers) on the topics of data protection and data sharing. With the increased number of initiatives requesting access to patient data to support research, it is important to know how patients feel about their health data being used.

The Rare Barometer Voices is a tool that surveys people living in Europe with a rare disease in order to understand their perspective and opinions on a variety of subjects that concern them.

To participate in this survey follow the link here

Link to press release here

We look forward to seeing the results of this survey soon! Deadline for responses is March 31st, 2018!

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