- Alberto Ruiz-Gallardón
- OPSTELTEN IvoMinister for Security and Justice, The Netherlands
- KARL BeatrixFederal Minister for Justice, Austria
- GOWIN JarosławMinister for Justice, Poland
- TEIXEIRA DA CRUZ PaulaMinister for Justice, Portugal
- PIVNICERU Mona MariaMinister for Justice, Romania
- PLICANIC SenkoMinister for Justice and Public Administration, Slovenia
- BOREC TomášMinister for Justice, Slovakia
- HENRIKSSON Anna-MajaMinister for Justice, Finland
- ASK BeatriceMinister for Justice, Sweden
- GRAYLING ChrisLord Chancellor, Secretary of State for Justice, United Kingdom
- ROUPAKIOTIS AntoniosMinister for Justice, Transparency and Human Rights, Greece
- BILTGEN François, Minister for JusticeMinister for Higher Education and Research, Luxembourg
- Jan Philipp ALBRECHTRapporteur to EU Parliament on the General Data Protection Regulation, Member LIBE
- Juan Fernando LÓPEZ AGUILARChair, LIBE
- Alexander ALVAROShadow Rapporteur, Vice-President European Parliament; Substitute MemberLIBE
- Martin SchultzThe President of the European Parliament
- SAID ChrisMinister for Justice, Dialogue and the Family, Malta
- NAVRACSICS TiborMinister for Public Administration and Justice, Hungary
- BERNATONIS JuozasMinister for Justice, Lithuania
- Matthias GROOTEChair, Committee on the Environment, Public Health and Food Safety
- Klaus-Heiner LEHNEChair, Conference of Committee Chairs
- Axel VOSSShadow Rapporteur, Member LIBE
- Dimitrios DROUTSASShadow Rapporteur, Substitute Member LIBE
- TURTELBOOM AnnemieMinister for Justice, Belgium
- KOVATCHEVA DianaMinister for Justice, Bulgaria
- POSPISIL JiříMinister for Justice, Czech Republic
- BODSKOV MortenMinister for Justice, Denmark
- LEUTHEUSSER-SCHNARRENBERGER SabineFederal Minister for Justice, Germany
- MICHAL KristenMinister for Justice, Estonia
- SHATTER AlanMinister for Justice and Equality; Minister for Defence, Ireland
- RUIZ-GALLARDON JIMENEZ AlbertoMinister for Justice, Spain
- TAUBIRA ChristianeKeeper of the Seals, Minister for Justice, France
- SEVERINO DI BENEDETTO PaolaMinister for Justice, Italy
- LOUCA LoucasMinister for Justice and Public Order, Cyprus
- BERZINS GaidisMinister for Justice, Latvia
- All MembersEuropean Parliament
Don’t Stop Research on Rare Diseases!
Research on Rare Diseases (RD) and the care of patients living with them have specific needs. Due to the rarity of patients and the scarcity of information related to each rare disease, collaboration and maximum use of limited resources available is particularly necessary. Indeed, for most rare diseases no single institution, and in many cases no single country, has a sufficient number of patients to develop a sound knowledge on the disease and its care.
The EU Council Recommendation on Rare Diseases and the EU Parliament and Council Directive on Cross-Border Health Care witness the need and urgency for cooperation among Countries in collecting and sharing data to foster research and care regarding patients living with rare diseases. Indeed, these complex diseases are still largely unknown and are being approached, with promising but still occasional successes in the last few years, thanks to the new tools of biomedical and genetic research.
This positive perspective is now endangered in the Parliamentary discussion of the General Data Protection Regulation, which is opened by the Draft Report, released by the rapporteur for the LIBE committee, Jan Philipp Albrecht (Germany), whose position is clarified by the disconcerting justification that “Processing of sensitive data for historical, statistical and scientific research purposes is not as urgent or compelling as public health or social protection. Consequently, there is no need to introduce an exception which would put them on the same level as the other listed justifications.”(Justification to Amendment 27).
Missing the opportunity of exploiting and sharing the small amount of data that are collected, will dramatically delay the improvement of health care of RD patients.De facto, it would result in discrimination of RD patients regarding their right to quality health care and will pose a serious ethical problem to the EU and national Institutions.
Therefore, I call the whole community interested in the advancement of health research, particularly on rare diseases, to sign this petition and spread the word on the need to sign it as soon as possible. The EU Parliament activities on the Regulation are already on going and the discussion is scheduled to be concluded by June 2013.
Luciano Vittozzi, MSc, EPIRARE Project Manager
(The photograph, titled "The wait", has been selected from the works participating in the 5th Art Contest “The Pegasus Flight” (2013) aiming to promote social inclusion of patients living with rare diseases. It refers to the life of the only child in Europe, and one of the nine in the world, known to be affected by the X-linked Pigmentary Reticulate Disorder)
- Alberto Ruiz-Gallardón
- Minister for Security and Justice, The Netherlands
- Federal Minister for Justice, Austria
- Minister for Justice, Poland
- Minister for Justice, Portugal
TEIXEIRA DA CRUZ Paula
- Minister for Justice, Romania
PIVNICERU Mona Maria
- Minister for Justice and Public Administration, Slovenia
- Minister for Justice, Slovakia
- Minister for Justice, Finland
- Minister for Justice, Sweden
- Lord Chancellor, Secretary of State for Justice, United Kingdom
- Minister for Justice, Transparency and Human Rights, Greece
- Minister for Higher Education and Research, Luxembourg
BILTGEN François, Minister for Justice
- Rapporteur to EU Parliament on the General Data Protection Regulation, Member LIBE
Jan Philipp ALBRECHT
- Chair, LIBE
Juan Fernando LÓPEZ AGUILAR
- Shadow Rapporteur, Vice-President European Parliament; Substitute MemberLIBE
- The President of the European Parliament
- Minister for Justice, Dialogue and the Family, Malta
- Minister for Public Administration and Justice, Hungary
- Minister for Justice, Lithuania
- Chair, Committee on the Environment, Public Health and Food Safety
- Chair, Conference of Committee Chairs
- Shadow Rapporteur, Member LIBE
- Shadow Rapporteur, Substitute Member LIBE
- Minister for Justice, Belgium
- Minister for Justice, Bulgaria
- Minister for Justice, Czech Republic
- Minister for Justice, Denmark
- Federal Minister for Justice, Germany
- Minister for Justice, Estonia
- Minister for Justice and Equality; Minister for Defence, Ireland
- Minister for Justice, Spain
RUIZ-GALLARDON JIMENEZ Alberto
- Keeper of the Seals, Minister for Justice, France
- Minister for Justice, Italy
SEVERINO DI BENEDETTO Paola
- Minister for Justice and Public Order, Cyprus
- Minister for Justice, Latvia
- European Parliament
On behalf of the European rare disease community at large, we express our deep concern on the content of the Draft Report, released by Jan Philipp Albrecht, rapporteur of the Draft Regulation on the protection of personal data (General Data Protection Regulation).
If certain crucial amendments would be accepted (e.g. Amendments 13-14; 27; 84-85; 327-328; 334-337), it would be the end of health research progress in Europe. Such blindly excessive protection of personal data will unjustifiably reduce the hopes of patients, and remarkably of RD patients, for being relieved from debilitating conditions which today are not treatable and even not diagnosable.
The EU Parliament and the Council are called to give a sign of consistency with their Recommendation on Rare Diseases (2009) and the Directive on Cross-Border Health Care (2011).
Therefore, we urge the European Parliament and the Council on:
1. Article 83 and the associated derogations are to remain in the Regulation;
2. Safeguards are to appropriately ensure safe and secure processing of personal data without hindering its use for health research;
3. Pseudonymisation is to be subject to proportionate safeguards.
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