{"id":171048,"date":"2026-02-25T14:54:30","date_gmt":"2026-02-25T19:54:30","guid":{"rendered":"https:\/\/wfh.org\/article\/communique-de-la-fmh-sur-larret-de-la-production-du-valoctocogene-roxaparvovec-rvox-roctavian\/"},"modified":"2026-03-09T14:53:14","modified_gmt":"2026-03-09T18:53:14","slug":"communique-de-la-fmh-sur-larret-de-la-production-du-valoctocogene-roxaparvovec-rvox-roctavian","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-larret-de-la-production-du-valoctocogene-roxaparvovec-rvox-roctavian\/","title":{"rendered":"Communiqu\u00e9 de la FMH sur l\u2019arr\u00eat de la production du valoctocogene roxaparvovec-rvox (ROCTAVIAN)"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"171048\" class=\"elementor elementor-171048 elementor-170576\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-eeb05ce elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"eeb05ce\" 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-e97cc11\" data-id=\"e97cc11\" 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-d982995 elementor-widget elementor-widget-text-editor\" data-id=\"d982995\" 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>Il est imp\u00e9ratif que les compagnies pharmaceutiques maintiennent leurs engagements de s\u00e9curit\u00e9 m\u00eame apr\u00e8s l\u2019abandon des th\u00e9rapies. Il est tout aussi important que les donn\u00e9es des essais cliniques et les donn\u00e9es commerciales concernant toutes les th\u00e9rapies g\u00e9niques continuent \u00e0 \u00eatre collect\u00e9es sur le long terme, pour pouvoir suivre les r\u00e9sultats li\u00e9s \u00e0 la s\u00e9curit\u00e9.<\/p>\n<p>La FMH et d\u2019autres organisations ont fait part de leur position \u00e0 ce sujet dans deux articles publi\u00e9s pr\u00e9c\u00e9demment\u00a0:<\/p>\n<ul>\n<li>\u00ab\u00a0Critical Juncture in the Development of Hemophilia Therapies: A Statement and Call-to-Action from the International Society on Thrombosis and Haemostasis (ISTH), the European Association for Haemophilia and Allied Disorders (EAHAD) and the World Federation of Hemophilia (WFH) for the importance of continued research into and development of effective and safe hemophilia treatments\u00a0\u00bb (Un tournant crucial dans le d\u00e9veloppement des th\u00e9rapies de l\u2019h\u00e9mophilie\u00a0: communiqu\u00e9 et appel \u00e0 l\u2019action de l\u2019International Society on Thrombosis and Haemostasis (ISTH), de l\u2019European Association for Haemophilia and Allied Disorders (EAHAD) et de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie pour d\u00e9fendre l\u2019importance de poursuivre la recherche et le d\u00e9veloppement en mati\u00e8re de traitements efficaces et s\u00fbrs de l\u2019h\u00e9mophilie), que vous pouvez <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\">consulter ici<\/a> (en anglais)<\/li>\n<li>\u00ab\u00a0The Critical Need to Consolidate All Gene Therapy Data in Haemophilia\u00a0\u00bb (La n\u00e9cessit\u00e9 critique de consolider toutes les donn\u00e9es de la th\u00e9rapie g\u00e9nique dans l\u2019h\u00e9mophilie), publi\u00e9 dans la revue <em>Haemophilia <\/em>et <a href=\"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hae.70128\" target=\"_blank\" rel=\"noopener\">consultable ici<\/a> (en anglais)<\/li>\n<\/ul>\n<p>La FMH exhorte toutes les compagnies pharmaceutiques impliqu\u00e9es dans la production de produits th\u00e9rapeutiques pour l\u2019h\u00e9mophilie \u00e0 poursuivre leur engagement envers notre communaut\u00e9 mondiale. Les donn\u00e9es peuvent \u00eatre recueillies par le biais de notre Registre de la th\u00e9rapie g\u00e9nique (RTG), un registre prospectif, observationnel et longitudinal con\u00e7u pour recueillir des donn\u00e9es \u00e0 long terme sur les personnes atteintes d\u2019h\u00e9mophilie qui b\u00e9n\u00e9ficient de la th\u00e9rapie g\u00e9nique. Pour en savoir plus sur ce registre, <a href=\"https:\/\/wfh.org\/fr\/recherche-et-collecte-de-donnees\/registre-de-la-therapie-genique\/\" target=\"_blank\" rel=\"noopener\">cliquez ici<\/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>En octobre 2025, BioMarin a annonc\u00e9 sa d\u00e9cision de retirer le valoctocogene roxaparvovec-rvox (ROCTAVIAN) de son portefeuille de produits. Le 23 f\u00e9vrier 2026, l\u2019entreprise a annonc\u00e9 qu\u2019\u00e0 cause de son impossibilit\u00e9 \u00e0 trouver un acheteur pour ce produit, elle retirait volontairement le roxaparvovec-rvox du march\u00e9. La F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) en prend acte et encourage BioMarin et les autres entreprises d\u00e9veloppant des th\u00e9rapies g\u00e9niques \u00e0 poursuivre la surveillance des produits abandonn\u00e9s, et \u00e0 pr\u00e9server les donn\u00e9es cliniques qui s\u2019y rapportent afin de soutenir l\u2019approfondissement continu des connaissances et la s\u00e9curit\u00e9 des patient\u00b7es. <\/p>\n","protected":false},"author":13,"featured_media":30514,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[177,399,69],"tags":[],"search-category":[85],"class_list":["post-171048","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualite-medicale","category-featured-4-fr","category-plaidoyer","search-category-article"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.2 (Yoast SEO v27.2) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Communiqu\u00e9 de la FMH sur l\u2019arr\u00eat de la production du valoctocogene roxaparvovec-rvox (ROCTAVIAN) | FMH - F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie<\/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:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-larret-de-la-production-du-valoctocogene-roxaparvovec-rvox-roctavian\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Communiqu\u00e9 de la FMH sur l\u2019arr\u00eat de la production du valoctocogene roxaparvovec-rvox (ROCTAVIAN)\" \/>\n<meta property=\"og:description\" content=\"En octobre 2025, BioMarin a annonc\u00e9 sa d\u00e9cision de retirer le valoctocogene roxaparvovec-rvox (ROCTAVIAN) de son portefeuille de produits. Le 23 f\u00e9vrier 2026, l\u2019entreprise a annonc\u00e9 qu\u2019\u00e0 cause de son impossibilit\u00e9 \u00e0 trouver un acheteur pour ce produit, elle retirait volontairement le roxaparvovec-rvox du march\u00e9. La F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) en prend acte et encourage BioMarin et les autres entreprises d\u00e9veloppant des th\u00e9rapies g\u00e9niques \u00e0 poursuivre la surveillance des produits abandonn\u00e9s, et \u00e0 pr\u00e9server les donn\u00e9es cliniques qui s\u2019y rapportent afin de soutenir l\u2019approfondissement continu des connaissances et la s\u00e9curit\u00e9 des patient\u00b7es.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-larret-de-la-production-du-valoctocogene-roxaparvovec-rvox-roctavian\/\" \/>\n<meta property=\"og:site_name\" content=\"FMH - F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/wfhemophilia\/\" \/>\n<meta property=\"article:published_time\" content=\"2026-02-25T19:54:30+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-03-09T18:53:14+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/WFH-statement-News-FR.png\" \/>\n\t<meta property=\"og:image:width\" content=\"2501\" \/>\n\t<meta property=\"og:image:height\" content=\"1459\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Mitch Semienchuk\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Mitch Semienchuk\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-larret-de-la-production-du-valoctocogene-roxaparvovec-rvox-roctavian\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-larret-de-la-production-du-valoctocogene-roxaparvovec-rvox-roctavian\/\"},\"author\":{\"name\":\"Mitch Semienchuk\",\"@id\":\"https:\/\/wfh.org\/fr\/#\/schema\/person\/4aea5b13c1966452a640eef39423925b\"},\"headline\":\"Communiqu\u00e9 de la FMH sur l\u2019arr\u00eat de la production du valoctocogene roxaparvovec-rvox (ROCTAVIAN)\",\"datePublished\":\"2026-02-25T19:54:30+00:00\",\"dateModified\":\"2026-03-09T18:53:14+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-larret-de-la-production-du-valoctocogene-roxaparvovec-rvox-roctavian\/\"},\"wordCount\":365,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/fr\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-larret-de-la-production-du-valoctocogene-roxaparvovec-rvox-roctavian\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/WFH-statement-News-FR.png\",\"articleSection\":[\"Actualit\u00e9 m\u00e9dicale\",\"Featured 4 - 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F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-larret-de-la-production-du-valoctocogene-roxaparvovec-rvox-roctavian\/","og_locale":"fr_FR","og_type":"article","og_title":"Communiqu\u00e9 de la FMH sur l\u2019arr\u00eat de la production du valoctocogene roxaparvovec-rvox (ROCTAVIAN)","og_description":"En octobre 2025, BioMarin a annonc\u00e9 sa d\u00e9cision de retirer le valoctocogene roxaparvovec-rvox (ROCTAVIAN) de son portefeuille de produits. 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