{"id":643,"date":"2018-06-21T12:27:18","date_gmt":"2018-06-21T10:27:18","guid":{"rendered":"http:\/\/dev.fondationpierrefabre.org\/?p=643"},"modified":"2019-02-15T16:30:18","modified_gmt":"2019-02-15T15:30:18","slug":"albinisme-conference-debat-linstitut-francais-de-bamako","status":"publish","type":"post","link":"https:\/\/dev.fondationpierrefabre.org\/fr\/axes-dintervention\/dermatologie-tropicale\/albinisme-conference-debat-linstitut-francais-de-bamako\/","title":{"rendered":"Albinisme \u2013 Conf\u00e9rence-d\u00e9bat \u00e0 l\u2019Institut fran\u00e7ais de Bamako"},"content":{"rendered":"

Albinisme \u2013 Conf\u00e9rence-d\u00e9bat \u00e0 l\u2019Institut fran\u00e7ais de Bamako<\/h1>\n<\/div>
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21\/06\/2018<\/strong><\/p>\n

Le 19 juin dernier, la Fondation a co-organis\u00e9 \u00e0 Bamako une conf\u00e9rence-d\u00e9bat sur le th\u00e8me de la situation sanitaire des personnes atteintes d\u2019albinisme en Afrique.<\/strong><\/p>\n

Cette conf\u00e9rence a permis de r\u00e9unir les acteurs institutionnels et de sant\u00e9 et les associations qui \u0153uvrent au Mali pour l\u2019am\u00e9lioration de la condition des personnes touch\u00e9es par cette maladie g\u00e9n\u00e9tique.<\/p>\n

\"\"Co-organis\u00e9e avec\u00a0l\u2019Institut Fran\u00e7ais du Mali<\/a>, l\u2019association Solidarit\u00e9 pour l\u2019Insertion des Albinos du Mali,\u00a0le service de dermatologie du\u00a0Centre national d\u2019appui \u00e0 la lutte contre la Maladie<\/a>\u00a0(partenaires de la Fondation<\/a>) et\u00a0l\u2019Ambassade de France au Mali<\/a>, cette conf\u00e9rence a r\u00e9uni plus d\u2019une centaine de participants : familles de patients avec leurs enfants\u00a0; repr\u00e9sentants de toutes les associations de malades du Mali\u00a0; m\u00e9decins (ophtalmologues, psychologues, p\u00e9diatres, chercheurs)\u00a0; ONG et artistes. La famille de la jeune Ramata Diarra, assassin\u00e9e en raison de sa condition \u00e0 Fana mi-mai 2018, \u00e9tait \u00e9galement venue t\u00e9moigner. Les institutions pr\u00e9sentes et les participants ont pu leur manifester leur soutien et leur solidarit\u00e9.<\/p>\n

Anim\u00e9e par Jean-Marie Milleliri, Conseiller r\u00e9gional en Sant\u00e9 mondiale \u00e0 l\u2019Ambassade de France au Mali, cette rencontre a permis de suivre notamment les interventions du Pr Ousmane Faye, Chef du service dermatologie du Centre National d\u2019Appui \u00e0 la lutte contre la maladie, Vice-Doyen de la Facult\u00e9 de M\u00e9decine de Bamako, de Lalla Aicha Diakit\u00e9, Pr\u00e9sidente de l\u2019association Solidarit\u00e9 pour l\u2019Insertion des Albinos du Mali, et de Amaury Bertaud, charg\u00e9 de projets sant\u00e9 au Mali de la Fondation Pierre Fabre.<\/p>\n<\/div>

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Alerter sur les dangers du soleil<\/strong><\/p>\n

Malgr\u00e9 une prise de conscience internationale des cons\u00e9quences sociales de l\u2019albinisme en Afrique, les cons\u00e9quences sur la sant\u00e9, telles que les br\u00fblures dues au soleil et les cancers cutan\u00e9s, sont moins m\u00e9diatis\u00e9es. Pourtant elles font \u00e9norm\u00e9ment de victimes. En Afrique sub saharienne, la pr\u00e9valence de l\u2019albinisme est 4 \u00e0 5 fois sup\u00e9rieure \u00e0 ce que l\u2019on observe dans le reste du monde, et peut atteindre jusqu\u2019\u00e0 1 personne sur 1500 dans certaines r\u00e9gions (Tanzanie et Malawi par exemple). L\u2019albinisme est responsable d\u2019une sensibilit\u00e9 extr\u00eame au soleil, avec un important risque de d\u00e9velopper un cancer de la peau pour les personnes concern\u00e9es.<\/p>\n

C\u2019est dans ce contexte que la Fondation Pierre Fabre s\u2019investit depuis 2015 dans des programmes visant \u00e0 am\u00e9liorer le d\u00e9pistage pr\u00e9coce des cancers de la peau et \u00e0\u00a0prendre en charge les personnes atteintes d\u2019albinismes au Mali<\/a>,\u00a0en\u00a0Tanzanie et au Malawi<\/a>, et prochainement \u00e9tendus au Togo et au Burkina Faso.<\/p>\n

La conf\u00e9rence a \u00e9t\u00e9 film\u00e9e et sera prochainement disponible sur le site.<\/p>\n

La presse en parle :<\/strong><\/p>\n

PressAfrik :\u00a0Journ\u00e9e de l\u2019Albinisme : comment \u2018\u2019vivre sous le soleil\u2019\u2019 au c\u0153ur des d\u00e9bats<\/a><\/p>\n

RFI :\u00a0Interview de Aicha Diakit\u00e9, Pr\u00e9sidente de l\u2019Association Solidarit\u00e9 pour l’Insertion des Albinos du Mali, pour la journ\u00e9e mondiale de l\u2019albinisme<\/a><\/p>\n<\/div>

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Le 19 juin dernier, la Fondation a co-organis\u00e9 \u00e0 Bamako une conf\u00e9rence-d\u00e9bat sur le th\u00e8me de la situation sanitaire des personnes atteintes d\u2019albinisme en Afrique.<\/p>\n","protected":false},"author":2,"featured_media":645,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[44,42,48,19],"tags":[],"class_list":["post-643","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-conference","category-dermatologie-tropicale","category-mali","category-suivre-notre-action"],"acf":[],"yoast_head":"\nAlbinisme \u2013 Conf\u00e9rence-d\u00e9bat \u00e0 l\u2019Institut Fran\u00e7ais de Bamako<\/title>\n<meta name=\"description\" content=\"Cette conf\u00e9rence a r\u00e9uni plus de 100 participants : patients avec leurs enfants, repr\u00e9sentants des\u00a0 associations de malades du Mali, m\u00e9decins, ONG et artistes.\" 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