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Parliamentary questions
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21 February 2012
Answer given by Mr Dalli on behalf of the Commission
Question reference: E-012656/2011

Haemochromatosis is one of the most frequent hereditary diseases in Europe. It tends to be under-diagnosed, partly because its symptoms are similar to those of a range of other illnesses. There is no accepted European study on the prevalence of the disease. Even if a doubt about exact epidemiological data in Europe persists, it has been recommended to stakeholders to use the facilities of the EU framework on rare diseases.

The Commission's action on rare diseases is presented in the communication on Rare Diseases: Europe's challenges(1). Due to the very high number of diseases, the Commission does not have the means to address each individual rare disease with specific actions. This is why the Commission seeks to provide solutions for rare diseases as a whole and does not intend to develop specific guidelines on early detection and diagnosis of hereditary haemochromatosis, nor is it planning to organise awareness campaigns addressing health professionals.

The Commission has however been supporting collaborative research in this area through its Framework Programme for Research (FP7) since 2007. The Commission supported the research project EUROIRON on Genetic control of the pathogenesis of diseases based on iron accumulation(2) especially haemochromatosis. The EuroGentest Network(3) has also developed useful tools for genetic testing in haemochromatosis. Further opportunities for investigating diseases of iron metabolism may arise in future calls for proposals within FP7.

The Commission has proposed to the Parliament and the Council to give due consideration to genetic diseases in the Health, demographic change and wellbeing section of the Societal Challenges priority in its proposal for Horizon 2020, the FP for Research and Innovation (2014-2020).

(1)COM(2008) 679 final.
(3)EuroGentest Network for test development, harmonisation, validation and standardisation of genetic testing in Europe, http://www.eurogentest.org/

OJ C 81 E, 20/03/2013
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