EURORDIS webinar: Are our Hospitals and Research Infrastructures ready for the new General Data Protection Regulation (GDPR)?
Thursday 2 February 11:00 - 12:30 CET French time (10:00 - 11:30 GMT UK time)

EURORDIS is organising a webinar to inform rare disease patients on the legal and ethical impacts of the new data protection regulation on data sharing in Europe.

The GDPR was officially adopted in April 2016 and will enter into application in all EU Member States in May 2018. The new regulation provides for a harmonization of the data protection regulations throughout the EU with a strict data protection compliance regime.
The webinar will include presentations from:

-Dr Petra Wilson, Director at the Digital Health and Care Institute, Scotland, who will explain the legal impacts of the new data protection regulation for sharing data cross-border for virtual healthcare consultations in the future European Reference Networks (ERNs).

-Dr Deborah Mascalzoni, bioethicist at Uppsala University, Sweden who will focus on the ethical aspects of the new regulation relating to data sharing in European research projects for rare diseases.

Each presentation will be followed by an interactive Q&A. The webinar will be moderated by Dr Virginie Bros-Facer, EURORDIS Research Infrastructure Project Manager.

This webinar will address the following points: consent (for personal data being processed), legal roles for a data controller, data processor in organisations, new rights of data subjects, security and sanctions.

Suggested reading materials include:

- A guide for patients and patients' organisations prepared by European Patients Forum: "The new EU regulation on the protection of personal data: what does it mean for patients?" See:

- An article prepared by BBMRI-ERIC (Biobanking and Biomolecular Resources Research Infrastructure - European Research Infrastructure Consortium) on news about GDPR implementation and guidance for the Article 29 Working Party. See

Register for the webinar below.

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