A large group of patient organisations and research consortia involved in the rare disease field has released a public statement expressing deep concern over a draft of the proposed new legal framework for the protection of personal data in the EU, the so-called Data Protection Regulation.
It is feared that if the regulation is passed by the European Parliament in the wording released on 16 January 2013 by Jan Philipp Albrecht (Greens/European Free Alliance, Germany), this could spell the end of progress in health research in Europe, in particular the end of research into rare diseases.
The ability to share data is considered crucial to advances in medical research into rare diseases, and the group behind today’s statement, which includes the voice of patients from three continents, strongly urges the members of the European Parliament who will be considering the proposal to consider the right of patients to quality healthcare and to work on achieving the right balance between data protection and creating a research-friendly environment that will not put future medical advances for rare disease patients at risk.
- Writing to your MEP to express your concerns (click here to find your MEP)
- Forwarding this information to all those with an interest in rare disease
Click here to download the full statement as a PDF file.