{"id":6132,"date":"2025-05-06T13:05:44","date_gmt":"2025-05-06T11:05:44","guid":{"rendered":"https:\/\/www.ehc.eu\/non-classifiee\/lehc-soutient-la-declaration-de-listh-de-leahad-et-du-teletravail-sur-le-moment-critique-du-traitement-de-lhemophilie\/"},"modified":"2026-04-02T16:31:42","modified_gmt":"2026-04-02T14:31:42","slug":"lehc-soutient-la-declaration-de-listh-de-leahad-et-du-teletravail-sur-le-moment-critique-du-traitement-de-lhemophilie","status":"publish","type":"post","link":"https:\/\/www.ehc.eu\/fr\/nouvelles\/lehc-soutient-la-declaration-de-listh-de-leahad-et-du-teletravail-sur-le-moment-critique-du-traitement-de-lhemophilie\/","title":{"rendered":"L\u2019EHC soutient la d\u00e9claration de l\u2019ISTH, de l\u2019EAHAD et du t\u00e9l\u00e9travail sur le moment critique du traitement de l\u2019h\u00e9mophilie"},"content":{"rendered":"<!-- hero -->\t<section   class=\"subpage-hero bg-white\">\n\t\t<div class=\"container\">\n\t\t\t<div class=\"relative z-10\">\n\t\t\t\t<div class=\"pt-16 lg:pt-24 pb-24 lg:pb-32\">\n\t\t\t\t\t<div class=\"row justify-between gap-10 lg:gap-0 mt-10 text-center lg:text-left\">\n\t\t\t\t\t\t<div class=\"w-full lg:w-6\/12 lg:self-center\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"title h2\" data-scroll data-fade-up>\n\t\t\t\t\t\t\t\t\t<p class=\"text-[115%]\">L\u2019EHC soutient la d\u00e9claration de l\u2019ISTH, de l\u2019EAHAD et du t\u00e9l\u00e9travail sur le moment critique du traitement de l\u2019h\u00e9mophilie<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<figure class=\"absolute size-[41.8rem] lg:size-[82.8rem] bottom-[-10%] right-[-10rem] lg:right-[-5%] image-contain opacity-100 skip-lazy\" data-parallax>\n\t\t\t\t\t<img decoding=\"async\" loading=\"eager\" src=\"https:\/\/www.ehc.eu\/wp-content\/themes\/cbd\/img\/content-logo-colorfull-2.svg\" alt=\"content-logo-colorfull\">\n\t\t\t\t<\/figure>\n\t\t\t\t\t\t<\/section>\n<!-- overview -->\t<section   class=\"s-overlay-img s-padding bg-red\">\n\t\t<div class=\"container\">\n\t\t\t<div class=\"row w-full lg:flex-row justify-between text-center lg:text-left gap-14 lg:gap-0 relative z-10\">\n\t\t\t\t\t\t\t\t<div class=\"w-full lg:py-10\">\n\t\t\t\t\t<div class=\"bg-white min-h-full py-12 px-10 lg:py-24 lg:pl-24 xl:pl-44 relative radius-20 z-10\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"content mt-8\" data-scroll data-fade-up>\n\t\t\t\t\t\t\t\t<p>L\u2019EHC s\u2019associe \u00e0 la <strong><a href=\"https:\/\/www.isth.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">Soci\u00e9t\u00e9 internationale sur la thrombose et l\u2019h\u00e9mostase (ISTH),<\/a><\/strong> <strong><a href=\"https:\/\/www.eahad.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">\u00e0 l\u2019Association europ\u00e9enne pour l\u2019h\u00e9mophilie et les troubles associ\u00e9s (EAHAD),<\/a><\/strong> <strong><a href=\"https:\/\/wfh.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (WFH)<\/a><\/strong> et d\u2019autres organisations internationales de premier plan pour publier 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><!-- wp:paragraph --><\/p>\n<p>Au cours de la derni\u00e8re d\u00e9cennie, le traitement de l\u2019h\u00e9mophilie a consid\u00e9rablement progress\u00e9, passant du remplacement intraveineux traditionnel aux th\u00e9rapies de substitution sous-cutan\u00e9e, aux agents de r\u00e9\u00e9quilibrage et aux th\u00e9rapies g\u00e9niques. Ces innovations offrent des r\u00e9sultats et une qualit\u00e9 de vie nettement am\u00e9lior\u00e9s pour les personnes atteintes d\u2019h\u00e9mophilie, y compris celles atteintes de maladie l\u00e9g\u00e8re ou mod\u00e9r\u00e9e, les femmes et les personnes pr\u00e9sentant des troubles h\u00e9morragiques associ\u00e9s. <\/p>\n<p><!-- \/wp:paragraph --> <!-- wp:paragraph --><\/p>\n<p>Ces derni\u00e8res ann\u00e9es, trois th\u00e9rapies g\u00e9niques \u2014 <em>ROCTAVIAN<\/em>, <em>HEMGENIX<\/em> et <em>BEQVEZ<\/em> \u2014 ont re\u00e7u l\u2019approbation r\u00e9glementaire, marquant une \u00e9tape historique. De mani\u00e8re pr\u00e9occupante, plusieurs entreprises ont r\u00e9cemment arr\u00eat\u00e9, interrompu ou r\u00e9duit les programmes de th\u00e9rapie g\u00e9nique, invoquant un int\u00e9r\u00eat limit\u00e9 de la communaut\u00e9 et une incertitude commerciale. <\/p>\n<p><!-- \/wp:paragraph --> <!-- wp:paragraph --><\/p>\n<p>Les all\u00e9gations de d\u00e9sint\u00e9r\u00eat de la part de la communaut\u00e9 de l\u2019h\u00e9mophilie sont trompeuses et compromettent les avanc\u00e9es en th\u00e9rapie g\u00e9nique. L\u2019adoption lente actuelle est fortement li\u00e9e \u00e0 des incertitudes commerciales, \u00e0 des syst\u00e8mes de sant\u00e9 fragment\u00e9s, \u00e0 des d\u00e9fis de remboursement, \u00e0 des incertitudes \u00e0 long terme sur les r\u00e9sultats et \u00e0 des barri\u00e8res syst\u00e9miques, et non \u00e0 un manque d\u2019int\u00e9r\u00eat et\/ou de besoin. <\/p>\n<p><!-- wp:paragraph --><\/p>\n<p>Plus que jamais, les soci\u00e9t\u00e9s scientifiques et m\u00e9dicales et les communaut\u00e9s de patients r\u00e9clament et soutiennent le d\u00e9veloppement de th\u00e9rapies h\u00e9mophiliques g\u00e9niques et nouvelles et s\u00fbres et efficaces.<\/p>\n<p><!-- \/wp:paragraph --> <!-- wp:paragraph --><\/p>\n<p><strong>Nous exhortons toutes les parties prenantes \u2014 industrie, r\u00e9gulateurs, payeurs, financeurs, chercheurs, cliniciens et patients \u2014 \u00e0 :<\/strong><\/p>\n<ul>\n<li>Soutenir la recherche, l\u2019investissement et les d\u00e9veloppements cliniques dans des th\u00e9rapies innovantes et avanc\u00e9es, y compris les th\u00e9rapies g\u00e9niques et les th\u00e9rapies non substitutives ;<!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li>Optimiser et \u00e9largir l\u2019acc\u00e8s aux traitements existants dans le monde entier ;<!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li>R\u00e9duire les charges inutiles dans le d\u00e9veloppement clinique et les processus d\u2019approbation des m\u00e9dicaments<!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li>D\u00e9velopper des cadres de remboursement clairs et \u00e9quitables ; et<!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li>Renforcer la collaboration, la recherche et l\u2019\u00e9ducation \u00e0 l\u2019\u00e9chelle mondiale.<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --> <!-- wp:paragraph --><\/p>\n<p>L\u2019avenir de l\u2019h\u00e9mophilie<!-- \/wp:paragraph -->d\u00e9pend de l\u2019action 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, efficaces et qui changent leur vie. <\/p>\n<p><em>En plus de l\u2019ISTH, de l\u2019EAHAD et du t\u00e9l\u00e9travail, cette d\u00e9claration est approuv\u00e9e par :<\/em><\/p>\n<ul>\n<li><a href=\"https:\/\/www.asgct.org\/\" target=\"_blank\" rel=\"noopener\">Soci\u00e9t\u00e9 am\u00e9ricaine de th\u00e9rapie g\u00e9nique et cellulaire (ASGCT)<\/a><!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li><a href=\"https:\/\/www.apsth.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">Soci\u00e9t\u00e9 Asie-Pacifique sur la thrombose et l\u2019h\u00e9mostase (APSTH)<\/a><!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li><a href=\"https:\/\/www.ahadap.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">Association pour l\u2019h\u00e9mophilie et les troubles connexes &#8211; Asie-Pacifique (AHADAP)<\/a><!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li>Consortium europ\u00e9en de l\u2019h\u00e9mophilie (EHC)<!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li><a href=\"https:\/\/www.esgct.eu\/\" target=\"_blank\" rel=\"noreferrer noopener\">Soci\u00e9t\u00e9 Europ\u00e9enne de Th\u00e9rapie G\u00e9nique et Cellulaire (ESGCT)<\/a><!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li><a href=\"https:\/\/www.claht.org\/web\/\" target=\"_blank\" rel=\"noreferrer noopener\">Grupo Cooperativo Latinoamericano de Hemostasia y Trombosis (Grupo CLAHT)<\/a><!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li><a href=\"https:\/\/www.bleeding.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">Fondation Nationale des Troubles H\u00e9morragiques (NBDF)<\/a><\/li>\n<\/ul>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"bottom mt-12\" data-scroll data-fade-up>\n\t\t\t\t\t\t\t\t<a href=\"https:\/\/www.isth.org\/news\/699516\/\" target=\"_blank\" class=\"btn with-icon\">\n\t\t\t\t\t\t\t\t\t<span>Read the full statement here<\/span>\n\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/section>\n","protected":false},"excerpt":{"rendered":"<p>L\u2019EHC s\u2019associe \u00e0 la Soci\u00e9t\u00e9 internationale sur la thrombose et l\u2019h\u00e9mostase (ISTH), l\u2019Association europ\u00e9enne pour l\u2019h\u00e9mophilie et les troubles associ\u00e9s (EAHAD), la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (WFH) et d\u2019autres organisations internationales de premier plan pour publier 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","protected":false},"author":4,"featured_media":4350,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[64],"tags":[193,191,192],"class_list":["post-6132","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nouvelles","tag-acces-au-traitement-et-aux-soins","tag-enonce","tag-hemophilie"],"acf":[],"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"https:\/\/www.ehc.eu\/wp-content\/uploads\/2025\/05\/V3-Call-to-Action-on-Hemophilia-Treatments.png","_links":{"self":[{"href":"https:\/\/www.ehc.eu\/fr\/wp-json\/wp\/v2\/posts\/6132","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.ehc.eu\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.ehc.eu\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.ehc.eu\/fr\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/www.ehc.eu\/fr\/wp-json\/wp\/v2\/comments?post=6132"}],"version-history":[{"count":1,"href":"https:\/\/www.ehc.eu\/fr\/wp-json\/wp\/v2\/posts\/6132\/revisions"}],"predecessor-version":[{"id":6136,"href":"https:\/\/www.ehc.eu\/fr\/wp-json\/wp\/v2\/posts\/6132\/revisions\/6136"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.ehc.eu\/fr\/wp-json\/wp\/v2\/media\/4350"}],"wp:attachment":[{"href":"https:\/\/www.ehc.eu\/fr\/wp-json\/wp\/v2\/media?parent=6132"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.ehc.eu\/fr\/wp-json\/wp\/v2\/categories?post=6132"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.ehc.eu\/fr\/wp-json\/wp\/v2\/tags?post=6132"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}