fédération des maladies rares

maladies rares maladies orphelines nez rouges , maladie rare maladie orpheline nez rouge Briser l'isolement des 4 millions de personnes
atteintes en France de l'une des 8 000
maladies rares et méconnues.

Le communiqué suivant a été publié à l'issue du Conseil des ministres de ce jour :

Conseils des ministres

3-12-2008 13:17

Les maladies rares

La ministre de la santé, de la jeunesse, des sports et de la vie associative a présenté une communication sur les maladies rares.

Ces maladies sont dites rares, car elles touchent moins d'une personne sur 2 000, mais elles sont nombreuses : 7 à 8 000 sont décrites, qui concernent directement 3 à 4 millions de Français et indirectement leurs familles et leurs proches. Nombre d'entre elles sont sévères et invalidantes.

La France est le premier pays d'Europe à s'être doté d'un plan « maladies rares » 2005-2008.

Il a déjà permis le financement de 200 nouveaux projets de recherche, la mise en place de centres de référence et l'accès précoce à des thérapeutiques innovantes, ainsi qu'un meilleur accès à l'information.

Sur la base des résultats de l'évaluation du Haut Conseil de la Santé Publique, disponibles fin février 2009, de nouvelles orientations seront identifiées pour un futur plan. Il sera élaboré en étroite collaboration avec les associations de patients et entrera en application au plus tard en 2010.

Bravo encore aux 200 000 signataires de la pétition de la FMO !

La pétition est close : www.fmo.fr/petition

Les actions de la FMO : www.maladies-orphelines.fr/FMO/actions.asp

Soutenir nos actions : www.orphadon.org


FMO - Fédération des Maladies Orphelines - 6, rue Sainte-Lucie - 75015 Paris - Association reconnue d'utilité publique - Tel : 01 43 25 98 00

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