Local view for "http://purl.org/linkedpolitics/eu/plenary/2009-04-23-Speech-4-093"

Predicate	Value (sorted: default)
rdf:type	lpv_eu:Speech2
dcterms:Date	"2009-04-23"^^xsd:date2
dcterms:Is Part Of	lp_eu:Rare diseases (debate)2
dcterms:Language	"fr"^^xsd:language2
lpv:document identification number	"en.20090423.5.4-093"2
lpv:hasSubsequent	lp_eu:2009-04-23-Speech-4-0942
lpv:speaker	lp:Françoise Grossetête2
lpv:spokenAs	member; ENVI (2007-01-31--2009-07-13)3,3 member; EPP-ED (2007-02-15--2009-07-13)3,3 unknown; Union pour un Mouvement Populaire (2004-07-20--2009-07-13)3,3 member; Delegation to the Euro-Mediterranean Parliamentary Assembly (2004-09-15--2009-07-13)3,3 member; Delegation for relations with Australia and New Zealand (2007-03-15--2009-07-13)3,3 substitute; ITRE (2007-01-31--2009-07-13)3,3
lpv:translated text	"Mr President, patients affected by rare diseases suffer misdiagnoses and, often, receive no treatment. The rarity of these diseases creates challenges both from a scientific and an economic viewpoint. Now, having been the rapporteur on the regulation on orphan medicinal products, ten years ago, I know how these patients are too few to be a local or regional issue and how, on the other hand, the diseases are too numerous to be taught to health professionals. Expertise is therefore rare. The response, of necessity, involves Europe, and our Committee on Industry, Research and Energy supports Mr Trakatellis in his desire to strengthen research and prevention. How can we deny, for example, a couple whose two children are affected by cystic fibrosis and who wish to have a third child, advances in research to prevent the latter being affected by the same disease? This is why patients need more coordination, more safety and more clarity. These are essential issues that meet Europe’s citizens’ expectations of a Europe for health."@en1
lpv:videoURI	<go to Events_and_structure europarl>2

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