{"id":63000,"date":"2025-02-16T13:17:28","date_gmt":"2025-02-16T12:17:28","guid":{"rendered":"https:\/\/lasentinelle.dz\/?p=63000"},"modified":"2025-02-16T13:17:29","modified_gmt":"2025-02-16T12:17:29","slug":"maladies-rares-plus-de-deux-millions-de-patients-atteints-recenses-en-algerie","status":"publish","type":"post","link":"https:\/\/lasentinelle.dz\/index.php\/2025\/02\/16\/maladies-rares-plus-de-deux-millions-de-patients-atteints-recenses-en-algerie\/","title":{"rendered":"Maladies rares: Plus de deux millions de patients atteints recens\u00e9s en Alg\u00e9rie"},"content":{"rendered":"\n<p>L&rsquo;Association Nationale des Pharmaciens Alg\u00e9riens (ANPHA) pr\u00e9voit de publier prochainement un rapport crucial sur la prise en charge des maladies rares et leurs traitements, selon une son pr\u00e9sident, le Dr Mouad Tabainet. &nbsp;Celui a expliqu\u00e9 hier \u00e0 Oran lors de la deuxi\u00e8me \u00e9dition du colloque national sur la prise en charge des maladies rares, dont le th\u00e8me cette ann\u00e9e porte sur \u00ab\u00a0Les nouvelles mises \u00e0 jour des textes r\u00e9glementaires relatifs \u00e0 la prise en charge de ces maladies\u00a0\u00bb que l&rsquo;ANPA s&rsquo;engage \u00e0 soumettre aux autorit\u00e9s publiques toutes les recommandations et mesures n\u00e9cessaires pour am\u00e9liorer cette prise en charge. Le Dr Tabainet a soulign\u00e9 que son association, apr\u00e8s s&rsquo;\u00eatre concentr\u00e9e sur le dossier du cancer ces trois derni\u00e8res ann\u00e9es, accorde d\u00e9sormais une attention particuli\u00e8re aux maladies rares, une pr\u00e9occupation croissante pour les autorit\u00e9s en raison de la complexit\u00e9 de leur prise en charge. \u00ab\u00a0En tant que partenaire social des instances scientifiques et gouvernementales, nous cherchons \u00e0 unir notre voix \u00e0 celle du patient pour d\u00e9velopper le parcours de prise en charge de la maladie rare, du d\u00e9pistage aux examens et traitements\u00a0\u00bb, a-t-il d\u00e9clar\u00e9. Il a ajout\u00e9 que \u00ab\u00a0le r\u00f4le des autorit\u00e9s se limite \u00e0 fournir tous les moyens n\u00e9cessaires, tandis que notre r\u00f4le en tant que professionnels est de traduire cette volont\u00e9 en actions concr\u00e8tes et de coordonner entre pharmaciens et sp\u00e9cialistes cliniciens pour une bonne prise en charge de cette cat\u00e9gorie de patients\u00a0\u00bb. La vice-pr\u00e9sidente de l&rsquo;ANPhA, Fatma Zohra Mansouri, a pour sa part rappel\u00e9 l&rsquo;importance de ce colloque qui traite de la prise en charge des maladies rares en Alg\u00e9rie conform\u00e9ment au nouveau texte r\u00e9glementaire publi\u00e9 fin d\u00e9cembre dernier, \u00e9tablissant une nouvelle liste de maladies rares et leurs traitements associ\u00e9s. L&rsquo;Alg\u00e9rie compte actuellement \u00ab\u00a0plus de deux millions de personnes atteintes de maladies rares\u00a0\u00bb, selon Mansouri, qui a pr\u00e9cis\u00e9 que \u00ab\u00a0la liste de ces maladies est pass\u00e9e de 28 dans l&rsquo;ancien texte r\u00e9glementaire de 2013 \u00e0 126 dans la nouvelle l\u00e9gislation de d\u00e9cembre\u00a0\u00bb. Le colloque a notamment abord\u00e9 l&rsquo;amylose AL et la mucoviscidose, nouvellement incluses dans la liste des maladies rares. Le pr\u00e9sident du bureau r\u00e9gional d&rsquo;Oran de l&rsquo;ANPHA, Bouanani Abdennour, a insist\u00e9 sur la n\u00e9cessit\u00e9 de renforcer le r\u00f4le du pharmacien dans la prise en charge des maladies rares, particuli\u00e8rement en ce qui concerne l&rsquo;information fournie aux patients et \u00e0 leurs familles sur les m\u00e9thodes de diagnostic. La rencontre a couvert divers aspects, notamment le diagnostic des maladies rares, les traitements disponibles et les modalit\u00e9s d&rsquo;approvisionnement.<\/p>\n\n\n\n<p>Chokri Hafed<\/p>\n","protected":false},"excerpt":{"rendered":"<p>L&rsquo;Association Nationale des Pharmaciens Alg\u00e9riens (ANPHA) pr\u00e9voit de publier prochainement un rapport crucial sur la prise en charge des maladies<\/p>\n","protected":false},"author":6,"featured_media":63001,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"colormag_page_container_layout":"default_layout","colormag_page_sidebar_layout":"default_layout","footnotes":"","_wpscppro_dont_share_socialmedia":false,"_wpscppro_custom_social_share_image":0,"_facebook_share_type":"default","_twitter_share_type":"default","_linkedin_share_type":"default","_pinterest_share_type":"default","_linkedin_share_type_page":"","_instagram_share_type":"default","_medium_share_type":"default","_threads_share_type":"","_google_business_share_type":"","_selected_social_profile":[],"_wpsp_enable_custom_social_template":false,"_wpsp_social_scheduling":{"enabled":false,"datetime":null,"platforms":[],"status":"template_only","dateOption":"today","timeOption":"now","customDays":"","customHours":"","customDate":"","customTime":"","schedulingType":"absolute"},"_wpsp_active_default_template":true},"categories":[27],"tags":[],"class_list":["post-63000","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualite"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - 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