{"id":1527,"date":"2026-03-06T21:46:41","date_gmt":"2026-03-06T21:46:41","guid":{"rendered":"https:\/\/www.africascoop.net\/?p=1527"},"modified":"2026-03-06T21:46:58","modified_gmt":"2026-03-06T21:46:58","slug":"sante-pres-de-1-500-cas-de-maladies-rares-identifies-au-mali","status":"publish","type":"post","link":"https:\/\/www.africascoop.net\/index.php\/2026\/03\/06\/sante-pres-de-1-500-cas-de-maladies-rares-identifies-au-mali\/","title":{"rendered":"Sant\u00e9 : pr\u00e8s de 1 500 cas de maladies rares identifi\u00e9s au Mali"},"content":{"rendered":"\n
\"\"<\/figure>\n\n\n\n

Des professionnels de la sant\u00e9, regroup\u00e9s au sein d\u2019un r\u00e9seau, ont c\u00e9l\u00e9br\u00e9 le samedi 28 f\u00e9vrier dernier la 7\u1d49 \u00e9dition de la Journ\u00e9e internationale des maladies rares. L\u2019\u00e9v\u00e9nement, qui s\u2019est tenu au Centre national d\u2019appareillage et d\u2019orthop\u00e9die m\u00e9dicale du Quartier-Mali, a \u00e9t\u00e9 mis \u00e0 profit par les organisateurs pour \u00e9valuer la situation de ces maladies au Mali et tirer la sonnette d\u2019alarme.<\/em><\/strong><\/p>\n\n\n\n

L\u2019activit\u00e9 est organis\u00e9e pour la septi\u00e8me ann\u00e9e par l\u2019Association des maladies rares au Mali, en collaboration avec d\u2019autres organisations de professionnels de la sant\u00e9. Selon les organisateurs, plus de 350 millions de personnes dans le monde sont touch\u00e9es par ces maladies.<\/p>\n\n\n\n

Le professeur Mahamadou Traor\u00e9, pr\u00e9sident de la Soci\u00e9t\u00e9 malienne de g\u00e9n\u00e9tique humaine (SMGH), a apport\u00e9 des \u00e9claircissements sur les maladies rares : \u00ab Une maladie est dite rare lorsqu\u2019elle touche un nombre limit\u00e9 de personnes dans une population donn\u00e9e \u00bb, a-t-il d\u00e9clar\u00e9. Selon lui, plus de 7 000 types de maladies rares sont identifi\u00e9s dans le monde, dont 80 % sont d\u2019origine g\u00e9n\u00e9tique.<\/p>\n\n\n\n

Aux micros des journalistes, le Pr Guida Landour\u00e9, praticien hospitalier au CHU du Point-G et ma\u00eetre de conf\u00e9rences en neurologie, a \u00e9voqu\u00e9 la situation des maladies rares au Mali. \u00ab Nous avons recens\u00e9 pr\u00e8s de 1 500 patients atteints de maladies rares de types diff\u00e9rents dans plus de 870 familles au Mali \u00bb, affirme-t-il.<\/p>\n\n\n\n

Selon lui, les contraintes logistiques constituent un d\u00e9fi majeur pour la prise en charge des maladies rares dans le pays. \u00ab Le diagnostic de certains cas de maladies rares peut co\u00fbter jusqu\u2019\u00e0 2 millions de FCFA par patient. En dehors d\u2019un cadre de recherche financ\u00e9e, il est difficile de prendre en charge certains cas, m\u00eame si nous disposons de ressources humaines qualifi\u00e9es et du mat\u00e9riel ad\u00e9quat pour poser ces diagnostics \u00bb, a-t-il expliqu\u00e9.<\/p>\n\n\n\n

Le Pr Landour\u00e9 a \u00e9galement tir\u00e9 la sonnette d\u2019alarme en appelant \u00e0 une mobilisation g\u00e9n\u00e9rale pour lutter contre les maladies rares au Mali. \u00ab Il existe au Mali des familles atteintes de maladies rares dont les cas sont uniques au monde. Autrement dit, le diagnostic pos\u00e9 chez elles n\u2019a pas \u00e9t\u00e9 retrouv\u00e9 ailleurs. Si nous attendons que d\u2019autres d\u00e9veloppent des m\u00e9dicaments pour ensuite les appliquer chez nous, cela risque de fausser les r\u00e9sultats. Certains m\u00e9dicaments ne sont d\u2019ailleurs pas compatibles avec les pathologies observ\u00e9es ici. Il est donc n\u00e9cessaire que les gouvernants et les philanthropes s\u2019impliquent dans le financement de la recherche sur ces maladies, et que les patients s\u2019organisent en associations \u00bb, a-t-il plaid\u00e9.<\/p>\n\n\n\n

Pour Salif Coulibaly, pr\u00e9sident de l\u2019Association des maladies rares au Mali, la Journ\u00e9e mondiale des maladies rares vise, d\u2019une part, \u00e0 permettre aux malades de s\u2019exprimer sur leurs pathologies et, d\u2019autre part, \u00e0 offrir aux chercheurs un cadre pour pr\u00e9senter les r\u00e9sultats de leurs travaux et les avanc\u00e9es r\u00e9alis\u00e9es.<\/p>\n\n\n\n

Il souligne \u00e9galement que la prise en charge des maladies rares demeure tr\u00e8s complexe au Mali. \u00ab La prise en charge des maladies rares n\u00e9cessite d\u2019importants moyens. Environ 95 % des cas ne disposent pas de traitement. Et pour les rares maladies pouvant \u00eatre trait\u00e9es, les co\u00fbts sont extr\u00eamement \u00e9lev\u00e9s et peuvent atteindre plusieurs millions de dollars \u00bb, a-t-il indiqu\u00e9.<\/p>\n\n\n\n

\u00c0 noter que cette c\u00e9r\u00e9monie a \u00e9t\u00e9 marqu\u00e9e par des consultations gratuites au profit de plusieurs patients atteints de maladies rares d\u00e9j\u00e0 enr\u00f4l\u00e9s, ainsi que de nouveaux patients souhaitant conna\u00eetre leur \u00e9tat de sant\u00e9. Une conf\u00e9rence de presse marquant le lancement du R\u00e9seau des professionnels des maladies rares au Mali a \u00e9galement constitu\u00e9 l\u2019un des temps forts de cette activit\u00e9.<\/p>\n\n\n\n

Boubacar Kanout\u00e9<\/p>\n","protected":false},"excerpt":{"rendered":"

Des professionnels de la sant\u00e9, regroup\u00e9s au sein d\u2019un r\u00e9seau, ont c\u00e9l\u00e9br\u00e9 le samedi 28 f\u00e9vrier dernier la<\/p>\n","protected":false},"author":3,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[36,10],"tags":[],"class_list":["post-1527","post","type-post","status-publish","format-standard","hentry","category-exclusif","category-sante"],"yoast_head":"\nSant\u00e9 : pr\u00e8s de 1 500 cas de maladies rares identifi\u00e9s au Mali - Actualit\u00e9s Africaines<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.africascoop.net\/index.php\/2026\/03\/06\/sante-pres-de-1-500-cas-de-maladies-rares-identifies-au-mali\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Sant\u00e9 : pr\u00e8s de 1 500 cas de maladies rares identifi\u00e9s au Mali - 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