Un collectif "Alliance Maladies Rares"

vendredi 25 février 2000

Trente-huit associations regroupant environ 900 000 malades se sont constituées en collectif "Alliance Maladies Rares", jeudi 24 février 2000 à Paris (AFP).

Plus de 5 000 maladies rares, d’origine gĂ©nĂ©tique dans 80 % des cas, ont Ă©tĂ© recensĂ©es. Rares, car elles affectent seulement un petit nombre de malades, parfois moins de un par an, chaque maladie concernant moins de 30 000 personnes. Au total, elles touchent cependant 6 Ă  8 % de la population, soit, en France, 4 millions de personnes, et 25 Ă  30 millions en Europe.

Ce collectif entend agir auprĂšs des pouvoirs publics et des laboratoires, pour influer sur les politiques de recherche et peser sur l’industrie pharmaceutique afin qu’elle consacre des fonds Ă  ces maladies. De plus, l’Alliance se propose de rassembler les malades et les familles isolĂ©s et de mener des actions d’Ă©coute, d’information et d’accompagnement.

Voir en ligne: OpiMed.

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