Local view for "http://purl.org/linkedpolitics/eu/plenary/2009-04-23-Speech-4-095"
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"en.20090423.5.4-095"2
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".
I am grateful to Mr Trakatellis for his fine report. If there is one area where cooperation in Europe is useful and provides added value, it is certainly the area of rare diseases. In the case of rare metabolic diseases, muscular diseases and also rare forms of cancer, it is practical and useful to work together in order to exchange information on treatment techniques and to join forces. These are all very important. The information must also be made accessible, and the Trakatellis report provides for all these matters.
I would like to draw your attention to three matters. First, patients must have a voice in Europe. In recent years we have seen increasingly well organised patient groups that also know their way around Europe, around Brussels. That is all very important and informative for politicians, for many of these rare diseases are, logically, largely unknown. It is good, therefore, to determine how these patient organisations are financed, and it is extremely important to ensure that these organisations are financed independently and are not solely dependent on the pharmaceutical industry. That is why I am arguing in favour of financing for these patient organisations.
Secondly, the development of medicines for rare diseases, the so-called orphan medicinal products, is of crucial importance. That is why we have directives, but it would be good to devote some attention to seeing whether this is actually working well.
Thirdly, this is a controversial subject that has also been tackled by Mr Liese. Many rare diseases are hereditary. Research and embryo selection can prevent much suffering, but it is important that the Member States retain the power to decide as to the eventual treatments such as pre-implementation and embryo selection. We support Amendment 15, but we wish to delete the reference to the eradication of illnesses. That term summons up very unpleasant associations, as Mr Liese has already said. We also consider it important for the treatments to be voluntary and that they should take place within the boundaries established by national governments. If these conditions are met, we are in favour of the amendment and call on everyone to support it, but the reference to the eradication of illnesses should be deleted. Under these conditions, we can agree fully with the report and are enthusiastic about the work of Mr Trakatellis. Thank you for your attention."@en1
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