{"id":166959,"date":"2020-03-04T22:49:03","date_gmt":"2020-03-04T21:49:03","guid":{"rendered":"https:\/\/www.realites.com.tn\/?p=166959"},"modified":"2020-03-04T22:49:03","modified_gmt":"2020-03-04T21:49:03","slug":"tunisie-une-personne-sur-vingt-atteinte-de-lune-des-400-maladies-rares-identifiees","status":"publish","type":"post","link":"https:\/\/realites.com.tn\/fr\/tunisie-une-personne-sur-vingt-atteinte-de-lune-des-400-maladies-rares-identifiees\/","title":{"rendered":"Tunisie\u00a0: une personne sur vingt\u00a0 atteinte\u00a0de l\u2019une des 400 maladies rares identifi\u00e9es"},"content":{"rendered":"<p>Sanofi Tunisie ainsi que l\u2019Association Tunisienne des Maladies Lysosomales (ATML) soutiennent la 13<sup>\u00e8me<\/sup> Journ\u00e9e internationale des maladies rares.<br \/>\nLa journ\u00e9e Internationale des maladies rares (Rare Disease Day) est organis\u00e9e le dernier jour du mois de f\u00e9vrier de chaque ann\u00e9e, dans pr\u00e8s de 90 pays. L\u2019objectif principal de cette journ\u00e9e est de sensibiliser le grand public et les d\u00e9cideurs sur les maladies rares et leur impact sur la vie des personnes concern\u00e9es.<br \/>\nLes maladies rares se d\u00e9finissent comme des affections qui touchent moins d\u2019une personne sur 2000. N\u00e9anmoins, leur nombre important, plus de 8000 pathologies d\u00e9j\u00e0 recens\u00e9es, font que le nombre total de patients d\u00e9passe souvent le nombre de malades atteints de cancer. 350 millions de personnes dans le monde souffrent de ces pathologies.<\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\"alignnone size-full wp-image-166960\" src=\"https:\/\/www.realites.com.tn\/wp-content\/uploads\/2020\/03\/1000x300.jpg\" alt=\"\" width=\"1000\" height=\"300\" srcset=\"https:\/\/realites.com.tn\/fr\/wp-content\/uploads\/2020\/03\/1000x300.jpg 1000w, https:\/\/realites.com.tn\/fr\/wp-content\/uploads\/2020\/03\/1000x300-300x90.jpg 300w, https:\/\/realites.com.tn\/fr\/wp-content\/uploads\/2020\/03\/1000x300-768x230.jpg 768w\" sizes=\"(max-width: 1000px) 100vw, 1000px\" \/><br \/>\nUne personne sur 20 est concern\u00e9e par les maladies rares. Ces maladies sont souvent chroniques, \u00e9volutives et en g\u00e9n\u00e9ral graves. Leurs expressions sont extr\u00eamement diverses\u00a0: neuromusculaires, m\u00e9taboliques, infectieuses, immunes, canc\u00e9reuses.<br \/>\nParmi les maladies rares les plus connues, citons les maladies lysosomales (50 sont d\u00e9crites \u00e0 ce jour dont Gaucher, Fabry, MPS, Pompe\u2026) ainsi que la mucoviscidose, la maladie des enfants de la lune qui emp\u00eachent les malades de recevoir la lumi\u00e8re du jour, la maladie des os de verre ou ost\u00e9ogen\u00e8se imparfaite, qui rend les os extr\u00eamement fragiles, Ces maladies peuvent entra\u00eener des handicaps physiques et neurologiques.<br \/>\nSanofi Genzyme, l\u2019entit\u00e9 globale m\u00e9decine de sp\u00e9cialit\u00e9 de Sanofi, est un pionnier dans le domaine des maladies rares avec une exp\u00e9rience de plus de 35 ans en d\u00e9veloppant des th\u00e9rapies de substitution enzymatique pour plusieurs maladies de surcharge lysosomale.<em>\u00ab En tant que partenaire du parcours de sant\u00e9, Sanofi consacre ses efforts \u00e0 l\u2018\u00e9volution des traitements, soutient les efforts de recherche et propose des innovations th\u00e9rapeutiques qui ont le potentiel d\u2019apporter un changement significatif \u00e0 la vie des personnes souffrant de maladies rares \u00bb<\/em> a d\u00e9clar\u00e9 Docteur Bouchra Aneflous, Directrice de l\u2019activit\u00e9 Sanofi Genzyme Maroc-Tunisie-Libye<br \/>\nLes besoins des malades restent nombreux : acc\u00e8s au diagnostic, aux traitements, \u00e0 des soins adapt\u00e9s, \u00e0 des ressources et des services indispensables \u00e0 leur quotidien. Poursuivons tous les efforts pour une meilleure prise en charge des maladies rares en Tunisie en\u00a0:<\/p>\n<ul>\n<li>Renfor\u00e7ant l\u2019information \u00e0 destination des professionnels de sant\u00e9 sur les maladies rares.<\/li>\n<li>Am\u00e9liorant les outils de diagnostic<\/li>\n<li>Favorisant les actions de recherche et d\u00e9veloppement de nouveaux traitements\u00a0: rencontres r\u00e9guli\u00e8res entre chercheurs publics et priv\u00e9s, mutualisation des registres\/bases de donn\u00e9es, d\u00e9ploiement d\u2019\u00e9tudes cliniques\u2026<\/li>\n<li>D\u00e9veloppant l\u2019acc\u00e8s aux solutions th\u00e9rapeutiques pour les patients pour une meilleure prise en charge<\/li>\n<li>D\u00e9ployant des campagnes de sensibilisation sur les maladies rares \u00e0 destination du grand public<\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>Sanofi Tunisie ainsi que l\u2019Association Tunisienne des Maladies Lysosomales (ATML) soutiennent la 13\u00e8me Journ\u00e9e internationale des maladies rares. La journ\u00e9e Internationale des maladies rares (Rare Disease Day) est organis\u00e9e le&hellip;<\/p>\n","protected":false},"author":60,"featured_media":166961,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_lmt_disableupdate":"","_lmt_disable":"","_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[9],"tags":[],"class_list":["post-166959","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-societe"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.3 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Tunisie\u00a0: une personne sur vingt\u00a0 atteinte\u00a0de l\u2019une des 400 maladies rares identifi\u00e9es - R\u00e9alit\u00e9s Magazine<\/title>\n<meta name=\"description\" content=\"Sanofi Tunisie ainsi que l\u2019Association Tunisienne des Maladies Lysosomales (ATML) soutiennent la 13\u00e8me Journ\u00e9e internationale des maladies rares. 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