Local view for "http://purl.org/linkedpolitics/eu/plenary/2009-04-23-Speech-4-090"
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"Mr President, this Council recommendation is very timely, because concerted action in the field of rare diseases is an absolute necessity, both at European Union level and at national level.
An important aspect in combating rare diseases is patient mobility. This has already been examined in the Bowis report and I believe that patient mobility is absolutely justified here, because there are no special centres or experts able to undertake the treatment of patients in all the Member States. Consequently, it is absolutely vital here to make provision for patient mobility and for mobility of professionals, so that some can obtain expertise and others can pass on their experience.
Finally, I should say that, for rare genetic diseases, research and innovation are absolutely necessary in order to increase the number of diagnostic tests.
Most of the report concerns treatment, diagnosis, the acquisition of expertise and the creation of centres and networks. One point also concerns prevention. Prevention of genetic diseases is possible nowadays through a combination of in vitro fertilisation and pre-implantation tests. Because it is a recommendation, it is not binding on the Member States. The report states that it will only be carried out in the Member States whose legislation so allows and by the free will and choice of the persons who wish to follow this genetic advice and, therefore, I do not see that it clashes with the principle of subsidiarity as regards existing data.
Although the incidence for each rare disease is very low, millions of people are affected in the European Union because these diseases are measured in thousands. However, the proposal as received by Parliament was insufficient in its current state and it was not possible to produce a viable programme out of it. This is because it does not describe, at least in general terms, both the necessary funding by the European Union and the cofinancing by Member States or other organisations.
Thus it is not possible to promote certain essential aspects on rare diseases, namely the creation of networks of centres of expertise, cataloguing of diseases, collection of data, the special research required and so forth. The text asks for an implementation proposal from the Commission five years after the adoption, which is a long period during which nothing can be done in practice as there is no funding provided.
Therefore, as rapporteur, I propose that the Commission be asked to provide the implementation proposal at the latest by the end of 2012, since by this date the required data from Member States on expert centres and expertise on rare diseases will be at hand.
In this implementation proposal, specific mention should be made for funding and cofinancing in the following areas:
Firstly, the collection of epidemiological data and compiling a catalogue of rare diseases, as this is necessary in order to have a clear picture of the field of these diseases in the European Union.
Secondly, the formation of relevant networks.
Thirdly, the creation, in addition to existing expert centres, of new centres in Member States which lack such centres, the creation of special training courses in the existing centres for professionals to acquire the necessary expertise, the mobilisation of experts and professionals in order to create the necessary conditions for advancing existing knowledge and for research on diagnostic tools and tests on rare diseases and especially on genetic ones.
We should be viewing this Council recommendation as a roadmap to create helpful conditions in the field of rare diseases. We should also understand that it is of a general nature, but I would like to stress once more that, in order to be efficiently and successfully applied, the proposal needs to be more precise and to make provision for a specific timetable and funding."@en1
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