Local view for "http://purl.org/linkedpolitics/eu/plenary/2009-04-23-Speech-4-092"
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"en.20090423.5.4-092"2
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"Mr President, I should like to thank all the honourable Members who were involved in the work by Parliament on the proposal for a Council recommendation in the field of rare diseases.
I should like, in particular, to thank the rapporteur, Rector Antonios Trakatellis, for coordinating the discussions and, of course, for his report.
Rare diseases, which individually affect a very small number of people and the majority of which are genetic diseases, can lead to death or chronic disability. However, even though the incidence of each individual rare disease may be very low, as a whole these diseases affect approximately 6% of the total population of the European Union in some aspect of their lives.
This means that, in the European Union, between 29 and 36 million people are affected or are likely to be affected by a rare disease. However, because each disease is rare, it is impossible for each Member State to have the expertise needed to diagnose it and treat the patients. This is therefore an excellent example in the health sector where Europe can add particular value, which is why the Commission has approved the strategic action.
The European strategy is supplemented by the proposal for a Council recommendation on action within the Member States. The aim of this draft recommendation is to help Member States deal with rare diseases more effectively, more efficiently and more globally. One important sector for action is in collecting expertise via the European reference networks. These networks can add value to action by the Member States on rare diseases and in other cases. They can also facilitate the exchange of know-how and expertise and, where necessary, direct patients as to where they should go when this expertise cannot reach them.
The Commission’s proposal for a directive on patients’ rights to cross-border healthcare includes special provisions to support patient mobility and provide a legal framework for the European reference networks.
There are still many ways in which European action can support the Member States in combating rare diseases, such as by improved identification and recognition of diseases, by supporting research into rare diseases and with mechanisms such as regulation of orphan medicinal products.
My thanks therefore to Parliament for its support on the broad spectrum of issues covered by this report. I await your debate with a great deal of interest."@en1
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