Local view for "http://purl.org/linkedpolitics/eu/plenary/2009-04-23-Speech-4-091"
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"en.20090423.5.4-091"2
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".
Commissioner, ladies and gentlemen, rare diseases are dangerous and very complex diseases that threaten life or cause chronic invalidity. Despite their low prevalence the number of patients in the EU with these diseases is relatively high, and joint action is therefore necessary at an EU level. These are also reasons why the area of rare diseases is an EU health strategy priority.
The Czech Presidency believes that after the Council adopts the draft proposal on European action in the area of rare diseases there will be significant advances and improvements in the diagnosis of rare diseases, which is currently problematic due to the nature of rare diseases. Conditions will also improve for a much-needed sharing of expertise and experience in this area.
Due also to these reasons the Czech Presidency has taken an active approach in negotiating the draft, carrying forward the work of the French Presidency and the discussions at the EPSCO Council in December 2008.
I believe that the European Parliament and the Council share similar views on this matter. The initiative is necessary as it should improve the current situation for millions of patients suffering from these diseases and it should lead to an improvement in their chances of receiving adequate care and comprehensible information.
This should be achieved, for example, through the creation of common definitions of rare diseases, further development of EU activities based on the Orphanet network, coordination of European research including cooperation with third countries, the creation and support of centres of expertise and the development of European reference networks for rare diseases. The Council also recognises the key role played by independent patients’ organisations in developing and implementing national policies in the area of rare diseases.
The Czech Presidency is at present completing negotiations on the draft proposal in the working bodies of the Council and it will try to get it accepted by the EPSCO Council in June this year. However, due to the importance of this issue the Council has decided to consult the European Parliament also in this case, and it will carefully consider Parliament’s opinion.
I would like to end by once again thanking everyone who took part in preparing the European Parliament report and particularly the rapporteur Antonios Trakatellis for drawing it up."@en1
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