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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)

This petition was delivered to:
  • Alberto Ruiz-Gallardón
  • Minister for Security and Justice, The Netherlands
  • Federal Minister for Justice, Austria
    KARL Beatrix
  • Minister for Justice, Poland
    GOWIN Jarosław
  • Minister for Justice, Portugal
  • Minister for Justice, Romania
    PIVNICERU Mona Maria
  • Minister for Justice and Public Administration, Slovenia
    PLICANIC Senko
  • Minister for Justice, Slovakia
    BOREC Tomáš
  • Minister for Justice, Finland
    HENRIKSSON Anna-Maja
  • Minister for Justice, Sweden
    ASK Beatrice
  • Lord Chancellor, Secretary of State for Justice, United Kingdom
    GRAYLING Chris
  • Minister for Justice, Transparency and Human Rights, Greece
    ROUPAKIOTIS Antonios
  • 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
    Alexander ALVARO
  • The President of the European Parliament
    Martin Schultz
  • Minister for Justice, Dialogue and the Family, Malta
    SAID Chris
  • Minister for Public Administration and Justice, Hungary
  • Minister for Justice, Lithuania
  • Chair, Committee on the Environment, Public Health and Food Safety
    Matthias GROOTE
  • Chair, Conference of Committee Chairs
    Klaus-Heiner LEHNE
  • Shadow Rapporteur, Member LIBE
    Axel VOSS
  • Shadow Rapporteur, Substitute Member LIBE
    Dimitrios DROUTSAS
  • Minister for Justice, Belgium
    TURTELBOOM Annemie
  • Minister for Justice, Bulgaria
  • Minister for Justice, Czech Republic
  • Minister for Justice, Denmark
    BODSKOV Morten
  • Federal Minister for Justice, Germany
  • Minister for Justice, Estonia
    MICHAL Kristen
  • Minister for Justice and Equality; Minister for Defence, Ireland
    SHATTER Alan
  • Minister for Justice, Spain
  • Keeper of the Seals, Minister for Justice, France
    TAUBIRA Christiane
  • Minister for Justice, Italy
  • Minister for Justice and Public Order, Cyprus
    LOUCA Loucas
  • Minister for Justice, Latvia
    BERZINS Gaidis
  • European Parliament
    All Members

Luciano Vittozzi started this petition with a single signature, and now has 3,429 supporters. Start a petition today to change something you care about.