{"id":321955,"date":"2024-05-24T16:23:22","date_gmt":"2024-05-24T15:23:22","guid":{"rendered":"https:\/\/realites.com.tn\/fr\/?p=321955"},"modified":"2024-05-25T12:07:45","modified_gmt":"2024-05-25T11:07:45","slug":"150-experts-des-maladies-rares-maladies-rares-en-conclave-a-tunis","status":"publish","type":"post","link":"https:\/\/realites.com.tn\/fr\/150-experts-des-maladies-rares-maladies-rares-en-conclave-a-tunis\/","title":{"rendered":"150 experts\u00a0des \u00ab\u00a0maladies rares\u00a0\u00bb\u00a0en conclave\u00a0\u00e0 Tunis"},"content":{"rendered":"<p style=\"font-weight: 400;\"><strong>C&rsquo;est en pr\u00e9sence de quelque 150 experts scientifiques, m\u00e9decins et autres praticiens venus de Tunisie, d&rsquo;Alg\u00e9rie, d&rsquo;Egypte, de Libye, du Maroc que s&rsquo;est ouvert ce vendredi 24 mai 2024 \u00e0 Tunis la deuxi\u00e8me \u00e9dition du congr\u00e8s africain sur les maladies rares (Africa Rare Disease Summit).<\/strong><\/p>\n<p style=\"font-weight: 400;\">La manifestation, \u00e0 l&rsquo;initiative de Sanofi, se poursuivra jusqu&rsquo;au 25 mai. Une occasion idoine pour les chercheurs de partager leurs exp\u00e9riences dans le diagnostic, la prise en charge et le traitement des principales pathologies rares.<\/p>\n<p style=\"font-weight: 400;\">Une maladie est dite \u00ab rare \u00bb lorsqu\u2019elle touche moins d\u2019une personne sur 2000. Elles sont toutes s\u00e9v\u00e8res, chroniques, et d\u2019\u00e9volution progressive. L\u2019errance m\u00e9dicale qui en d\u00e9coule accentue le risque d\u2019aggravation de la maladie et peut d\u00e9t\u00e9riorer la qualit\u00e9 de vie des patients.<\/p>\n<p style=\"font-weight: 400;\"><strong>En Tunisie, pr\u00e8s de 600 000 personnes sont atteintes<\/strong><\/p>\n<p>A ce jour, l&rsquo;on d\u00e9nombre plus de 7 000 maladies rares qui affectent dans leur ensemble plus de 350 millions de personnes \u00e0 travers le monde. En Tunisie, pr\u00e8s de 600 000 personnes sont atteintes de pathologies rares.<\/p>\n<p style=\"font-weight: 400;\">La raret\u00e9 et la complexit\u00e9 des pathologies rares peuvent en compliquer le diagnostic et le traitement. Leur expression est extr\u00eamement diverse : neuromusculaire, m\u00e9tabolique, infectieuse, immune, canc\u00e9reuse.<\/p>\n<p style=\"font-weight: 400;\">Au cours des travaux, plusieurs scientifiques ont pu partager leurs exp\u00e9riences pour diagnostiquer leurs patients atteints de ces pathologies, et ce ne fut pas facile pour nombre d&rsquo;entre eux, qui ont d\u00fb faire des examens, consult\u00e9 des coll\u00e8gues afin de mettre un nom \u00e0 ces maladies.<\/p>\n<p style=\"font-weight: 400;\">Il faut reconna\u00eetre que Sanofi a toujours mobilis\u00e9 ses ressources pour aider les personnes atteintes de ces pathologies. Pionnier dans les maladies rares, Sanofi a mis au point en 1991 le premier traitement contre la maladie de Gaucher. Depuis, nous participons au d\u00e9veloppement de th\u00e9rapies qui changent la vie des patients et de leur famille dans les maladies de Pompe, de Fabry, la mucopolysaccharidose de type I et derni\u00e8rement la maladie de Nieman Pick (ASMD).<\/p>\n<p style=\"font-weight: 400;\">\u00ab\u00a0Depuis plus de 40 ans, Sanofi est un pionnier de la science, de l&rsquo;innovation et du soutien dans le domaine des maladies rares. Nous avons mobilis\u00e9 nos employ\u00e9s et nos ressources pour aider les personnes touch\u00e9es, ainsi que leurs familles et les prestataires de soins de sant\u00e9, qui peuvent rencontrer des difficult\u00e9s \u00e0 obtenir des diagnostics pr\u00e9cis et \u00e0 g\u00e9rer leurs soins. Malgr\u00e9 nos d\u00e9cennies d&rsquo;existence et les nombreuses \u00e9tapes franchies nous savons qu&rsquo;il existe encore des besoins non satisfaits et notamment l\u2019\u00e9quit\u00e9 dans le diagnostic, l\u2019innovation, l\u2019acc\u00e8s aux traitements et le soutien aux patients et \u00e0 leurs familles\u00a0\u00bb, a indiqu\u00e9 le Docteur Bouchra ANEFLOUS, Directrice de l\u2019activit\u00e9 M\u00e9decine de Sp\u00e9cialit\u00e9s Sanofi Maroc-Tunisie-Libye.<\/p>\n<p style=\"font-weight: 400;\">\n","protected":false},"excerpt":{"rendered":"<p>C&rsquo;est en pr\u00e9sence de quelque 150 experts scientifiques, m\u00e9decins et autres praticiens venus de Tunisie, d&rsquo;Alg\u00e9rie, d&rsquo;Egypte, de Libye, du Maroc que s&rsquo;est ouvert ce vendredi 24 mai 2024 \u00e0&hellip;<\/p>\n","protected":false},"author":60,"featured_media":321956,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_lmt_disableupdate":"","_lmt_disable":"","_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[4,2515],"tags":[],"class_list":["post-321955","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualites","category-sante"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.3 - 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