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Fondee en 1992 par Guy Alba, lAssociation Europeenne contre les Leucodystrophies (ELA) regroupe des familles qui se mobilisent pour vaincre ces maladies genetiques rares qui affectent le systeme nerveux et qui engendrent des situations de handicap tres lourd. Chaque semaine en France, 3 a 6 enfants naissent atteints de ces maladies degeneratives qui entrainent progressivement la perte des fonctions vitales : la vue, louie, la memoire, la locomotion... Depuis 29 ans, laction menee par ELA a permis didentifier une trentaine de leucodystrophies, de mettre au point les premiers traitements, daccompagner et de soutenir au quotidien les familles concernees. Le combat...
Leucodystrophie,fundraising,research networking,sensibilisation,santé,recherche médicale,accompagnement des familles,and collecte de fonds
Association ela operates in the Non-profit organizations industry.
Association ela's revenue is 11m - 100m
Association ela has 11 - 50 employees.
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