{"id":68123,"date":"2023-04-28T03:00:01","date_gmt":"2023-04-28T07:00:01","guid":{"rendered":"https:\/\/wfh.org\/article\/la-journee-mondiale-de-lhemophilie-2023-un-grand-succes-qui-a-touche-des-milliers-de-personnes\/"},"modified":"2024-04-30T10:06:27","modified_gmt":"2024-04-30T14:06:27","slug":"la-journee-mondiale-de-lhemophilie-2023-un-grand-succes-qui-a-touche-des-milliers-de-personnes","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/la-journee-mondiale-de-lhemophilie-2023-un-grand-succes-qui-a-touche-des-milliers-de-personnes\/","title":{"rendered":"La Journ\u00e9e mondiale de l\u2019h\u00e9mophilie 2023 : un grand succ\u00e8s qui a touch\u00e9 des milliers de personnes"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"68123\" class=\"elementor elementor-68123 elementor-67575\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-609aefe elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"609aefe\" data-element_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-19da149\" data-id=\"19da149\" data-element_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-213815f elementor-widget elementor-widget-text-editor\" data-id=\"213815f\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 25-07-2024 *\/\n.elementor-widget-text-editor.elementor-drop-cap-view-stacked .elementor-drop-cap{background-color:#69727d;color:#fff}.elementor-widget-text-editor.elementor-drop-cap-view-framed .elementor-drop-cap{color:#69727d;border:3px solid;background-color:transparent}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap{margin-top:8px}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap-letter{width:1em;height:1em}.elementor-widget-text-editor .elementor-drop-cap{float:left;text-align:center;line-height:1;font-size:50px}.elementor-widget-text-editor .elementor-drop-cap-letter{display:inline-block}<\/style>\t\t\t\t<p>Chaque ann\u00e9e, pour la <a href=\"https:\/\/wfh.org\/fr\/journee-mondiale-de-lhemophilie\/\" target=\"_blank\" rel=\"noopener\">Journ\u00e9e mondiale de l\u2019h\u00e9mophilie<\/a>, la communaut\u00e9 fait preuve d\u2019une solidarit\u00e9 qui nous inspire toutes et tous. \u00c0 la FMH, nous avons \u00e9t\u00e9 impressionn\u00e9\u00b7es par la force et le courage qui \u00e9maillent les nombreux t\u00e9moignages partag\u00e9s sur notre <a href=\"https:\/\/whdstories.wfh.org\/fr\/\" target=\"_blank\" rel=\"noopener\">site de t\u00e9moignage d\u00e9di\u00e9 \u00e0 la Journ\u00e9e<\/a>. Voici quelques extraits de trois r\u00e9cits que nous avons trouv\u00e9s marquants.<\/p>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-2796bb3 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2796bb3\" data-element_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-50 elementor-inner-column elementor-element elementor-element-a80ce00\" data-id=\"a80ce00\" data-element_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-ac850f1 elementor-widget elementor-widget-image\" data-id=\"ac850f1\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 25-07-2024 *\/\n.elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img[src$=\".svg\"]{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block}<\/style>\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"400\" height=\"358\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/04\/Hazri-Aris-WHD-copy.jpg\" class=\"attachment-large size-large wp-image-67564\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/04\/Hazri-Aris-WHD-copy.jpg 400w, https:\/\/wfh.org\/wp-content\/uploads\/2023\/04\/Hazri-Aris-WHD-copy-121x108.jpg 121w\" sizes=\"(max-width: 400px) 100vw, 400px\" \/>\t\t\t\t\t\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<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-bf6827f\" data-id=\"bf6827f\" data-element_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-227b6b8 elementor-widget elementor-widget-text-editor\" data-id=\"227b6b8\" data-element_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<p>\u00ab\u00a0Grandir a \u00e9t\u00e9 un parcours difficile, car je m\u2019inqui\u00e9tais constamment de mon prochain saignement et du moment o\u00f9 il surviendrait [\u2026] Gr\u00e2ce aux progr\u00e8s des traitements et des soins en Malaisie, j\u2019ai pu \u00eatre plac\u00e9 sous prophylaxie \u00e0 partir de mes 22 ans, ce qui a beaucoup r\u00e9duit mes saignements\u00a0; aujourd\u2019hui, j\u2019ai une vie saine et active.\u00a0\u00bb<br \/>\n\u2014Hazri Aris (Malaisie)<\/p>\n\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<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-e4598ad elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"e4598ad\" data-element_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-50 elementor-inner-column elementor-element elementor-element-0744d34\" data-id=\"0744d34\" data-element_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-cd81505 elementor-widget elementor-widget-image\" data-id=\"cd81505\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"400\" height=\"352\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/04\/Masood-Fareed-Malik-WHD-copy.jpg\" class=\"attachment-large size-large wp-image-67569\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/04\/Masood-Fareed-Malik-WHD-copy.jpg 400w, https:\/\/wfh.org\/wp-content\/uploads\/2023\/04\/Masood-Fareed-Malik-WHD-copy-123x108.jpg 123w\" sizes=\"(max-width: 400px) 100vw, 400px\" \/>\t\t\t\t\t\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<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-7955e96\" data-id=\"7955e96\" data-element_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-f2d27a8 elementor-widget elementor-widget-text-editor\" data-id=\"f2d27a8\" data-element_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<p>\u00ab\u00a0[\u2026] Je vis chaque jour de fa\u00e7on positive, avec le courage de faire face \u00e0 l\u2019incertitude et aux complications provoqu\u00e9es par l\u2019h\u00e9mophilie et ma co-infection. Ma vie n\u2019est pas aussi simple que celle des autres\u00a0; les \u00e9preuves que j\u2019ai affront\u00e9es m\u2019ont donn\u00e9 la d\u00e9termination non seulement de m\u2019aider moi-m\u00eame mais d\u2019aider les autres.\u00a0\u00bb<br \/>\n\u2014Masood Fareed Malik (Pakistan)<\/p>\n\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<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-deca48e elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"deca48e\" data-element_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-50 elementor-inner-column elementor-element elementor-element-74f4012\" data-id=\"74f4012\" data-element_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-d6dd94f elementor-widget elementor-widget-image\" data-id=\"d6dd94f\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"400\" height=\"296\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/04\/Genesis-cedeno-small.jpg\" class=\"attachment-large size-large wp-image-67559\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/04\/Genesis-cedeno-small.jpg 400w, https:\/\/wfh.org\/wp-content\/uploads\/2023\/04\/Genesis-cedeno-small-146x108.jpg 146w\" sizes=\"(max-width: 400px) 100vw, 400px\" \/>\t\t\t\t\t\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<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-784521b\" data-id=\"784521b\" data-element_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-e8ca2c8 elementor-widget elementor-widget-text-editor\" data-id=\"e8ca2c8\" data-element_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<p>\u00ab\u00a0Je fais partie de la troisi\u00e8me g\u00e9n\u00e9ration atteinte de la [maladie de Willebrand], et j\u2019ai toujours pens\u00e9 qu\u2019il \u00e9tait normal d\u2019\u00eatre an\u00e9mi\u00e9e et d\u2019avoir des saignements tr\u00e8s abondants lors de mes r\u00e8gles\u2026 [mais je me rends compte] qu\u2019il y a des solutions [m\u00e9dicales] pour les personnes comme moi. Je remercie toutes les personnes qui m\u2019ont aid\u00e9e dans mon parcours [\u2026] et qui m\u2019ont appris qu\u2019il \u00e9tait possible d\u2019avoir une bonne qualit\u00e9 de vie malgr\u00e9 les saignements.\u00a0\u00bb<br \/>\n\u2014G\u00e9nesis Cede\u00f1o (Venezuela)<\/p>\n\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 class=\"elementor-element elementor-element-06ff4d5 elementor-widget elementor-widget-text-editor\" data-id=\"06ff4d5\" data-element_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<p>Nous avons \u00e9t\u00e9 tr\u00e8s touch\u00e9\u00b7es de voir que le th\u00e8me et les ressources de la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie ont \u00e9t\u00e9 adapt\u00e9s pour refl\u00e9ter les discussions ayant lieu sur l\u2019acc\u00e8s aux soins dans diverses communaut\u00e9s du monde entier. Notre site, sur lequel toute la communaut\u00e9 a pu avoir acc\u00e8s \u00e0 des ressources pour le plaidoyer et la c\u00e9l\u00e9bration de cette journ\u00e9e (disponibles en anglais, fran\u00e7ais et espagnol), a re\u00e7u plus de 24\u00a0000 visites. Nos publications sur les r\u00e9seaux sociaux ont \u00e9t\u00e9 vues plus de 22\u00a0000 fois. Tout cela montre bien \u00e0 quel point notre communaut\u00e9 est investie et forme une grande famille.<\/p>\n<p>Au nom de la FMH et de toute la communaut\u00e9 des troubles de la coagulation, merci pour votre soutien lors de la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie. Pour en savoir plus sur cet \u00e9v\u00e9nement essentiel pour la communaut\u00e9 des troubles de la coagulation, <a href=\"https:\/\/wfh.org\/fr\/journee-mondiale-de-lhemophilie\/\" target=\"_blank\" rel=\"noopener\">cliquez ici<\/a>.<\/p>\n<p><em>La FMH tient \u00e0 remercier les sponsors de la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie 2023 pour leur soutien : Bayer, BioMarin Pharmaceutical Inc., Biotest, CSL Behring, F. Hoffman-La Roche Ltd., Freeline Therapeutics, GC Pharma, Grifols, Kedrion, LFB S.A, Novo Nordisk, Octapharma, Pfizer, Sanofi, Sobi, Spark Therapeutics et Takeda.<\/em><\/p>\n\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>Le 17 avril 2023 \u00e9tait la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie, et dans le monde entier, les gens se sont rassembl\u00e9s autour du th\u00e8me \u00ab Acc\u00e8s pour tous : la pr\u00e9vention des saignements comme r\u00e9f\u00e9rence mondiale de soins \u00bb. Des \u00e9v\u00e9nements ont eu lieu dans des dizaines de pays, la plupart en pr\u00e9sentiel pour la premi\u00e8re fois depuis le d\u00e9but de la pand\u00e9mie de COVID-19. Des b\u00e2timents et monuments ont \u00e9t\u00e9 \u00e9clair\u00e9s en rouge, la Journ\u00e9e a \u00e9t\u00e9 f\u00eat\u00e9e en petits et grands groupes, et l\u2019enthousiasme s\u2019est aussi fait sentir en ligne \u00e0 l\u2019occasion de cette journ\u00e9e fondamentale pour la communaut\u00e9 mondiale des troubles de la coagulation.<\/p>\n","protected":false},"author":13,"featured_media":67554,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[332,150],"tags":[],"search-category":[85],"class_list":["post-68123","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-2","category-world-hemophilia-day","search-category-article"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v23.4 (Yoast SEO v23.4) - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>La Journ\u00e9e mondiale de l\u2019h\u00e9mophilie 2023 : un grand succ\u00e8s qui a touch\u00e9 des milliers de personnes | 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\/la-journee-mondiale-de-lhemophilie-2023-un-grand-succes-qui-a-touche-des-milliers-de-personnes\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"La Journ\u00e9e mondiale de l\u2019h\u00e9mophilie 2023 : un grand succ\u00e8s qui a touch\u00e9 des milliers de personnes\" \/>\n<meta property=\"og:description\" content=\"Le 17 avril 2023 \u00e9tait la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie, et dans le monde entier, les gens se sont rassembl\u00e9s autour du th\u00e8me \u00ab Acc\u00e8s pour tous : la pr\u00e9vention des saignements comme r\u00e9f\u00e9rence mondiale de soins \u00bb. Des \u00e9v\u00e9nements ont eu lieu dans des dizaines de pays, la plupart en pr\u00e9sentiel pour la premi\u00e8re fois depuis le d\u00e9but de la pand\u00e9mie de COVID-19. 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