EURORDIS Joint Statement on Data Protection Regulation proposals

EURORDIS has issued a Joint Statement urging Members of the European Parliament to ensure that the proposed new legal framework for the protection of personal data in the EU, the so-called Data Protection Regulation, does not obstruct rare disease research, which depends on the pooling of information. The Statement calls for the clarification and strengthening of specific provisions in order to establish a productive European health research framework while protecting personal data. The amendments are proposed in the Draft Report by MEP Jan Philipp Albrecht (Group of the Greens/European Free Alliance, Germany) on the regulation on the protection of individuals with regard to the processing of personal data and on the free movement of such data (General Data Protection Regulation), published on 16 January 2013.

The EURORDIS Statement sounds an alarm to prevent the slowdown of medical research in Europe by introducing disproportionate measures on data protection. It is also a plea for specific provisions that would enhance rather than obstruct the collection and sharing of scarce data on rare diseases in order to better diagnose and treat these disorders. The Joint Statement from EURORDIS on behalf of 30 million patients in Europe is strongly supported by all relevant scientific learned societies and medical groups in Europe as well as organisations in Australia, Canada, New Zealand and the USA.

Listen to the interview of Flaminia Macchia, EU Public Affairs Director, EURORDIS following the lunch debate on Radio France Internationale, Brussels

Lunch Debate on Data Protection and Health Research

  • 26 September 2013 – 12.30 to 2 pm, European Parliament, Brussels
  • Summary
  • Agenda

Download the Data Protection Statement


Data protection directive Q&A
Questions & Answers on the revision of the
personal data protection directive



Page created: 28/02/2013
Page last updated: 05/06/2018
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