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Show that patients want to share our health data to improve research!

What is it about?

We would need your help for a campaign we are running on data protection with other partners. You may know that the proposal for a Regulation on the protection of personal data is currently discussed at EU level and that it may may lead to more fragmentation of data protection rules in Europe, that are likely to be burdensome for research projects, biobanks and patient registries if adopted.

The aim of this campaign is to ensure decision makers understand the importance of having Data Protections rules that facilitate research, and to show that patients and researchers have the same concerns and are united on this question.

How to take part?

We would like to collect pictures of you and your members, patients and patient representatives, holding up a banner in your hands showing that you want to share your data for health research.

Concretely, you will find the banners with the two campaign messages below: you are invited to translate these messages into your language to show the international dimension of this action and to print one of these messages before taking a picture of you with it in your hands.

Your picture will appear on the campaign‘s public website that will be released in mid-November as well as on social networks. We will further contact you to share your testimonial, if you agree with this of course, on how important you think that the sharing of personal data for research continues.

Researchers will do the same on their side to show that we are united on this question.

Easy as a click!

You can send this picture to our Communication person, Cynthia, at cynthia.bonsignore@eu-patient.eu who will be happy to further explain you how the campaign will work.

Please note that there are existing safeguards to protect patients‘ rights in research so this data is not used in a wrong way by the wrong people, you can contact laurene.souchet@eu-patient.eu to know more about this.

Thank you for helping us on this important campaign for patients!