Press release: FESCA sides with EURORDIS

FESCA aisbl shows solidarity with EURORDIS as it issues a Joint Statement to sound alarm on Data Protection EU Regulation and amendments that would hamper rare disease research and health research.

Paris, 01 March, 2013 –EURORDIS, the European Organisation for Rare Diseases, has released a Statement supported by other members of the European and international rare disease and health community, in response to proposed amendments to the EU Data Protection Regulation. These amendments, if adopted as they currently stand, would seriously hamper research for rare diseases, particularly in the area of data-sharing and registries, which are critical to the study of low-prevalence diseases. The amendments are proposed in the Draft Report by MEP Jan Philipp Albrecht 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.

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

The EURORDIS Statement specifically urges Members of the European Parliament to ensure that the new Data Protection EU Regulation clarifies and strengthens specific provisions in order to establish a productive European health research framework while protecting personal data.

Consult the EURORDIS Statement →

FESCA aisbl believes that a key word in the EURORDIS statement above is “disproportionate”, since it is important to strike a balance between protection of personal data and the ability to conduct research.