Local view for "http://purl.org/linkedpolitics/eu/plenary/2009-04-23-Speech-4-096"
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"en.20090423.5.4-096"2
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"Mr President, I would like to thank our rapporteur, Mr Trakatellis, and to apologise for my late arrival in this debate, whilst welcoming the group of visitors, who are the reason for my slightly late arrival.
During a hearing on rare diseases that I organised in Parliament last year with Eurordis – the European patients’ association – I pointed out that it was up to us, that it was up to Europe, to place the bar very high for these patients who are pinning all their hopes on research, and this is what our rapporteur has done here by considerably enhancing the Commission’s text.
The small number of patients involved in each country and the fragmentation of knowledge across the Union make rare diseases the example
for which concerted action at European level is an absolute necessity. Our unanimous desire is to have better knowledge of these diseases, to improve their diagnosis and their treatment and to give better care to patients and their families.
There remain, of course, the questions of the timetable and funding. Various options are available, and we are exploring them. Besides the funds granted by the European Union or by the States, it is also useful to find other sources of funding. One option that is working well in many Member States is public-private partnership.
I would be annoyed with myself if I did not mention here the considerable financial support also provided by citizens’ actions: the
in France and
in French-speaking Belgium. The latter has allowed no more and no less than a doubling of the budget for scientific research – a miserly budget, I might say in passing: EUR 13 per year per citizen, compared with EUR 50 in France and EUR 57 in Germany, to take but two examples.
I shall conclude, Mr President. Millions of patients in Europe are watching us. The will is there. It is up to us to ensure that this is more than just a catalogue of good intentions. Just one more thing: the Group of the Alliance of Liberals and Democrats for Europe supports Amendment 15."@en1
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