Local view for "http://purl.org/linkedpolitics/eu/plenary/2009-04-23-Speech-4-102"
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"en.20090423.5.4-102"2
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"Mr President, ladies and gentlemen, today’s debate demonstrated the high level of interest in this important sector of public health.
Mr President, I should like to close by pointing out that, with improved access for patients to specialist healthcare, with support for research and development of effective treatment and with cross-border cooperation, we hope that patients will find the specialists they need more easily.
European action in the field of rare diseases is an issue which has obtained general consent in all the institutions and I am grateful for Parliament’s support for this initiative.
Rare diseases are incontrovertibly recognised as a public health sector to which 27 different national approaches would be inadequate and inefficient. This recommendation will allow us to address the particular problems associated with rare diseases and to try to improve the lives of people affected by them
In addition to the patients themselves, this action will also affect their relatives and friends.
We shall achieve this in large part by recommending to the Member States that they develop plans and strategies on rare diseases and by creating European reference networks.
As regards Rector Trakatellis’s proposal that we prepare and present a report on the results of the recommendation by the end of 2012, we have no objection and shall bear it in mind.
Allow me now to turn to two or three references which were made by the honourable Members. First of all let me refer to Amendment 15 and to say that I wish to stress that ethical issues are outside the competence of the EU. This is particularly the case in this instance, due to legal differences in the Member States with regard to screening and the ethical choices that have to be made on the basis of that information.
There was reference to the need for funding. Funding for the treatment of rare diseases is for Member States to consider. The Commission hopes that these proposals will help to support the importance of such investment, as well as helping to make best possible use of the funds that are available through European cooperation.
Regarding additional Community funding, the limits on the current health programme are due to the overall financial perspective set by Parliament and the Council. If Parliament feels that more Community funding is needed for rare diseases, then Parliament must address these through the budgetary procedures.
Reference was made also by Mrs Corbey on the help we need to give patients’ groups. The Commission agrees with the importance of patients’ groups. We work closely with them and in particular with Eurordis. I recently hosted the launch of a book providing 12 000 patients’ testimonials. That engagement of citizens is a vital part of work in this area."@en1
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