{"id":142926,"date":"2025-05-06T09:00:37","date_gmt":"2025-05-06T13:00:37","guid":{"rendered":"https:\/\/wfh.org\/article\/un-tournant-critique-dans-le-developpement-des-therapies-pour-lhemophilie-des-associations-internationales-lancent-un-appel-urgent-a-laction\/"},"modified":"2025-07-14T08:26:34","modified_gmt":"2025-07-14T12:26:34","slug":"un-tournant-critique-dans-le-developpement-des-therapies-pour-lhemophilie-des-associations-internationales-lancent-un-appel-urgent-a-laction","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/un-tournant-critique-dans-le-developpement-des-therapies-pour-lhemophilie-des-associations-internationales-lancent-un-appel-urgent-a-laction\/","title":{"rendered":"Un tournant critique dans le d\u00e9veloppement des th\u00e9rapies pour l\u2019h\u00e9mophilie : des associations internationales lancent un appel urgent \u00e0 l\u2019action"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"142926\" class=\"elementor elementor-142926 elementor-142727\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-a84e9e5 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"a84e9e5\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-f87b22a\" data-id=\"f87b22a\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-8124ca3 elementor-widget elementor-widget-text-editor\" data-id=\"8124ca3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"\">L\u2019International Society on Thrombosis and Haemostasis (ISTH), la European Association for Haemophilia and Allied Disorders (EAHAD) et la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) publient une d\u00e9claration et un appel urgent \u00e0 l\u2019action en faveur d\u2019un engagement continu envers l\u2019innovation et l\u2019acc\u00e8s aux soins de l\u2019h\u00e9mophilie.<\/p>\n<p class=\"\">Ces dix derni\u00e8res ann\u00e9es, le traitement de l\u2019h\u00e9mophilie a beaucoup \u00e9volu\u00e9, passant du remplacement de facteur par voie intraveineuse \u00e0 des th\u00e9rapies substitutives sous-cutan\u00e9es, ainsi qu\u2019\u00e0 des agents de r\u00e9\u00e9quilibrage et \u00e0 des th\u00e9rapies g\u00e9niques.<\/p>\n<p class=\"\">Ces innovations offrent de bien meilleurs r\u00e9sultats et am\u00e9liorent aussi la qualit\u00e9 de vie des personnes atteintes d\u2019h\u00e9mophilie, y compris celles pr\u00e9sentant une forme l\u00e9g\u00e8re ou mod\u00e9r\u00e9e, ainsi que les femmes et les individus atteints de troubles de la coagulation associ\u00e9s.<\/p>\n<p class=\"\">R\u00e9cemment, trois th\u00e9rapies g\u00e9niques \u2014<em>ROCTAVIAN<\/em>, <em>HEMGENIX<\/em>, and <em>BEQVEZ<\/em>\u2014 ont re\u00e7u l\u2019approbation des organismes de r\u00e9glementation, ce qui constitue un tournant historique dans notre domaine. Pourtant, fait pr\u00e9occupant, plusieurs entreprises ont r\u00e9cemment abandonn\u00e9, interrompu ou limit\u00e9 leurs programmes de th\u00e9rapie g\u00e9nique, en invoquant un manque d\u2019int\u00e9r\u00eat de la part de la communaut\u00e9 et des incertitudes commerciales.<\/p>\n<p class=\"\">Le d\u00e9sint\u00e9r\u00eat suppos\u00e9 de la communaut\u00e9 de l\u2019h\u00e9mophilie est fallacieux et menace les progr\u00e8s de la th\u00e9rapie g\u00e9nique. Actuellement, la timidit\u00e9 de son adoption est fortement li\u00e9e \u00e0 des incertitudes commerciales, \u00e0 des syst\u00e8mes de sant\u00e9 trop fragment\u00e9s, \u00e0 des probl\u00e8mes de remboursement, \u00e0 des inconnues en mati\u00e8re de r\u00e9sultats \u00e0 long terme et \u00e0 des obstacles syst\u00e9miques, et non \u00e0 un manque d\u2019int\u00e9r\u00eat ou de besoin.<\/p>\n<p class=\"\">Plus que jamais, les soci\u00e9t\u00e9s scientifiques et m\u00e9dicales ainsi que les communaut\u00e9s de patient\u00b7es appellent de leur v\u0153ux et soutiennent le d\u00e9veloppement de th\u00e9rapies s\u00fbres et efficaces, comme la th\u00e9rapie g\u00e9nique ou d\u2019autres th\u00e9rapies nouvelles.<\/p>\n<p class=\"\"><strong>L\u2019ISTH, l\u2019EAHAD et la FMH exhortent toutes les parties prenantes (acteurs industriels, organismes de r\u00e9glementation, tiers payeurs, financeurs, chercheurs et chercheuses, clinicien\u00b7nes et patient\u00b7es) \u00e0 :<\/strong><\/p>\n<ul style=\"margin-bottom: 1rem;\">\n<li>soutenir la recherche, l\u2019investissement et le d\u00e9veloppement clinique en mati\u00e8re de th\u00e9rapies innovantes et avanc\u00e9es, notamment les th\u00e9rapies g\u00e9niques et non substitutives ;<\/li>\n<li>optimiser et \u00e9largir l\u2019acc\u00e8s aux traitements existants dans le monde entier ;<\/li>\n<li>r\u00e9duire les obstacles inutiles dans les proc\u00e9dures de d\u00e9veloppement clinique et d\u2019approbation des m\u00e9dicaments ;<\/li>\n<li>d\u00e9velopper des cadres clairs et justes de remboursement ;<\/li>\n<li>renforcer la collaboration, la recherche et l\u2019\u00e9ducation au niveau mondial.<\/li>\n<\/ul>\n<p class=\"\">L\u2019avenir des soins de l\u2019h\u00e9mophilie d\u00e9pend d\u2019une action collective. L\u2019innovation et l\u2019acc\u00e8s aux traitements doivent rester une priorit\u00e9 afin que toutes les personnes atteintes d\u2019h\u00e9mophilie, o\u00f9 qu\u2019elles vivent, puissent b\u00e9n\u00e9ficier de th\u00e9rapies s\u00fbres et efficaces en mesure de changer leur vie.<\/p>\n<p class=\"\">Pour lire la d\u00e9claration et l\u2019appel \u00e0 l\u2019action dans leur int\u00e9gralit\u00e9, <a href=\"https:\/\/wfh.org\/wp-content\/uploads\/2025\/05\/A-Statement-and-Call-to-Action-from-the-ISTH-EAHAD-WFH-FR.pdf\" target=\"_blank\" rel=\"noopener\">cliquez ici<\/a> (\u00ab Un tournant critique dans le d\u00e9veloppement des th\u00e9rapies pour l\u2019h\u00e9mophilie : d\u00e9claration et appel \u00e0 l\u2019action de l\u2019International Society on Thrombosis and Haemostasis (ISTH), la European Association for Haemophilia and Allied Disorders (EAHAD), la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) sur l\u2019importance de la continuit\u00e9 de la recherche et du d\u00e9veloppement de traitements efficaces et s\u00fbrs pour l\u2019h\u00e9mophilie \u00bb).<\/p>\n<p class=\"\">Les organisations suivantes se tiennent aux c\u00f4t\u00e9s de l\u2019ISTH, de l\u2019EAHAD et de la FMH pour soutenir cette d\u00e9claration :<\/p>\n<p class=\"\"><a href=\"https:\/\/www.asgct.org\/\" target=\"_blank\" rel=\"noopener\">American Society of Gene &amp; Cell Therapy<\/a><br class=\"\" \/><a href=\"https:\/\/www.apsth.org\/\" target=\"_blank\" rel=\"noopener\">Asian-Pacific Society on Thrombosis and Hemostasis<\/a><br class=\"\" \/><a href=\"https:\/\/www.ahadap.org\/\" target=\"_blank\" rel=\"noopener\">Association for Haemophilia and Allied Disorders-Asia Pacific<\/a><br class=\"\" \/><a href=\"https:\/\/www.ehc.eu\/\" target=\"_blank\" rel=\"noopener\">European Haemophilia Consortium<\/a><br class=\"\" \/><a href=\"https:\/\/www.esgct.eu\/\" target=\"_blank\" rel=\"noopener\">European Society for Gene and Cell Therapy<\/a><br class=\"\" \/><a href=\"https:\/\/www.claht.org\/web\/\" target=\"_blank\" rel=\"noopener\">Grupo Collectivo Latinoamericano de Hemostasis y Trombosis<\/a><br \/>\n<a href=\"https:\/\/www.bleeding.org\/who-we-are\/our-team\/masac\" target=\"_blank\" rel=\"noopener\">Medical and Scientific Advisory Council (MASAC)<\/a><br class=\"\" \/><a href=\"https:\/\/www.bleeding.org\/\" target=\"_blank\" rel=\"noopener\">National Bleeding Disorders Foundation<\/a><\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>L\u2019ISTH, la EAHAD et la FMH d\u00e9fendent la poursuite de l\u2019innovation et l\u2019acc\u00e8s \u00e9quitable aux soins de l\u2019h\u00e9mophilie<\/p>\n","protected":false},"author":13,"featured_media":142636,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[197,338],"tags":[],"search-category":[85],"class_list":["post-142926","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-declarations-publiques-et-recommandations-de-la-fmh","category-featured-3-fr","search-category-article"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.2 (Yoast SEO v27.2) - 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