{"id":53149,"date":"2022-12-20T10:39:28","date_gmt":"2022-12-20T15:39:28","guid":{"rendered":"https:\/\/wfh.org\/article\/appel-mondial-a-laction-relatif-a-la-mw-des-resultats-prouves-pour-les-personnes-atteintes-de-la-mw\/"},"modified":"2024-04-10T09:30:51","modified_gmt":"2024-04-10T13:30:51","slug":"appel-mondial-a-laction-relatif-a-la-mw-des-resultats-prouves-pour-les-personnes-atteintes-de-la-mw","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/appel-mondial-a-laction-relatif-a-la-mw-des-resultats-prouves-pour-les-personnes-atteintes-de-la-mw\/","title":{"rendered":"Appel mondial \u00e0 l\u2019action relatif \u00e0 la MW : des r\u00e9sultats prouv\u00e9s pour les personnes atteintes de la MW"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"53149\" class=\"elementor elementor-53149 elementor-52946\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-f82a43f elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"f82a43f\" 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-09dc506\" data-id=\"09dc506\" 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<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-2a347bb elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2a347bb\" 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-inner-column elementor-element elementor-element-1096146\" data-id=\"1096146\" 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-fb35af8 elementor-widget elementor-widget-text-editor\" data-id=\"fb35af8\" 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><a href=\"https:\/\/wfh.org\/fr\/identification-et-diagnostic\/#vwd\" target=\"_blank\" rel=\"noopener\">L\u2019Appel mondial \u00e0 l\u2019action relatif \u00e0 la MW<\/a> a \u00e9t\u00e9 mis en place pour identifier les priorit\u00e9s pouvant aider les ONM \u00e0 promouvoir des soins et des traitements adapt\u00e9s aux personnes atteintes de la MW dans leurs pays respectifs. L\u2019initiative \u00e9tait men\u00e9e par le Groupe mondial de la FMH sur la MW et prenait \u00e9galement en compte l\u2019avis du European Haemophilia Consortium (EHC). Ce groupe a activement d\u00e9march\u00e9 les diff\u00e9rents acteurs pendant cinq ans, et nous sommes aujourd\u2019hui tr\u00e8s fier\u00b7es de pouvoir dire que 65 ONM ont sign\u00e9 cet appel. Nous vous proposons ci-dessous quelques-uns des nombreux accomplissements de ces 65 ONM depuis 2017\u00a0:<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-b95f3c6 elementor-icon-list--layout-traditional elementor-list-item-link-full_width elementor-widget elementor-widget-icon-list\" data-id=\"b95f3c6\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-list.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<ul class=\"elementor-icon-list-items\">\n\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-check\"><\/i>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">En Malaisie, des webinaires d\u2019autonomisation des femmes et des filles atteintes de troubles de la coagulation ont r\u00e9uni des dizaines de participantes ;<\/span>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-check\"><\/i>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">En Syrie, une campagne de sensibilisation \u00e0 la MW a touch\u00e9 700 personnes et aid\u00e9 \u00e0 identifier 100 femmes et filles potentiellement atteintes de cette maladie ;<\/span>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-check\"><\/i>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">Aux \u00c9tats-Unis, une campagne de sensibilisation et de diagnostic intitul\u00e9e \u201cBetter You Know\u201d (\u00ab Mieux vaut savoir \u00bb) a touch\u00e9 pr\u00e8s de 900 femmes et filles, dont 77 % pr\u00e9sentaient un risque de trouble de la coagulation ;<\/span>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-check\"><\/i>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">Au Canada, une campagne de sensibilisation d\u2019une semaine sur les r\u00e9seaux sociaux a \u00e9t\u00e9 vue plus de 17 000 fois et un publireportage sur les femmes et les troubles de la coagulation a \u00e9t\u00e9 publi\u00e9 dans le magazine Global Heroes ;<\/span>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-check\"><\/i>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">En Serbie, l\u2019Outil ITSH-SSC d\u2019\u00e9valuation des saignements a \u00e9t\u00e9 traduit et rendu disponible aupr\u00e8s des gyn\u00e9cologues.<\/span>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t<\/ul>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-679ebfa elementor-widget elementor-widget-text-editor\" data-id=\"679ebfa\" 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>Au total, le r\u00e9sultat des activit\u00e9s des ONM et du travail du Groupe mondial sur la MW est vraiment remarquable. En 2017, 82\u00a0059 personnes avaient re\u00e7u un diagnostic de MW. Le tout dernier <a href=\"https:\/\/wfh.org\/fr\/article\/le-rapport-sur-le-sondage-mondial-annuel-2021-desormais-disponible\/\" target=\"_blank\" rel=\"noopener\">Sondage mondial annuel<\/a> (SMA) montre que ce chiffre atteint d\u00e9sormais 98\u00a0293, soit une augmentation de 19,8\u00a0%. Sur la m\u00eame p\u00e9riode, la collecte de conn\u00e9es pour la MW dans le cadre du SMA et du Registre mondial des troubles de la coagulation (<a href=\"https:\/\/wfh.org\/fr\/collecte-de-donnees\/#wbdr\" target=\"_blank\" rel=\"noopener\">RMTC<\/a>) a elle aussi augment\u00e9. De plus, on note <a href=\"https:\/\/wfh.org\/fr\/article\/les-recommandations-conjointes-ash-isth-nhf-fmh-sur-le-diagnostic-et-la-prise-en-charge-de-la-mw-sont-disponibles\/\" target=\"_blank\" rel=\"noopener\">la publication<\/a> des Recommandations ASH ISTH NHF FMH pour le diagnostic de la MW et les Recommandations ASH ISTH NHF FMH pour la prise en charge de la MW.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a048d64 elementor-widget elementor-widget-image\" data-id=\"a048d64\" data-element_type=\"widget\" data-e-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<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"800\" height=\"394\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/12\/Global-VWD-Call-to-Action-signatory-NMOs.jpg\" class=\"attachment-large size-large wp-image-52954\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/12\/Global-VWD-Call-to-Action-signatory-NMOs.jpg 1200w, https:\/\/wfh.org\/wp-content\/uploads\/2022\/12\/Global-VWD-Call-to-Action-signatory-NMOs-192x95.jpg 192w, https:\/\/wfh.org\/wp-content\/uploads\/2022\/12\/Global-VWD-Call-to-Action-signatory-NMOs-768x378.jpg 768w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">Liste des pays signataires de l\u2019Appel \u00e0 l\u2019action relatif \u00e0 la MW<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-948f0e6 elementor-widget elementor-widget-text-editor\" data-id=\"948f0e6\" 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>2022 touche d\u00e9sormais \u00e0 sa fin et la FMH tient \u00e0 exprimer sa gratitude et sa reconnaissance envers les membres du Groupe mondial sur la MW et les acteurs et actrices ayant particip\u00e9 \u00e0 cette campagne de cinq ans autour de l\u2019Appel \u00e0 l\u2019action relatif \u00e0 la MW. Le Programme d\u2019action Willebrand va continuer \u00e0 se concentrer sur l\u2019am\u00e9lioration de la qualit\u00e9 de vie des personnes atteintes de la MW dans le monde, notamment par la sensibilisation et l\u2019identification, le plaidoyer bas\u00e9 sur les donn\u00e9es probantes, l\u2019\u00e9ducation et l\u2019aide humanitaire.<\/p>\n<p>Pour en savoir plus sur le Programme d\u2019action Willebrand, <a href=\"https:\/\/wfh.org\/fr\/identification-et-diagnostic\/#vwd\" 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\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 2017, la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) lan\u00e7ait l\u2019Appel mondial \u00e0 l\u2019action relatif \u00e0 la MW pour renforcer la sensibilisation \u00e0 la maladie de Willebrand (MW) et permettre d\u2019am\u00e9liorer le diagnostic et la prise en charge clinique des personnes qui en sont atteintes dans le monde entier. Cette campagne a \u00e9t\u00e9 d\u00e9velopp\u00e9e dans le cadre du Programme d\u2019action Willebrand de la FMH, avec le soutien de plusieurs organisations nationales membres (ONM), dont le nombre a augment\u00e9 et regroupe aujourd\u2019hui l\u2019Afrique du Sud, l\u2019Australie, le Canada, les \u00c9tats-Unis, la Finlande, la France, l\u2019Inde, la Lettonie, la Malaisie, le Pakistan, le Panama, le Royaume-Uni, le Soudan et la Tunisie.<\/p>\n","protected":false},"author":13,"featured_media":52949,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[211,113],"tags":[],"search-category":[85],"class_list":["post-53149","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-femmes-et-filles-atteintes-dun-trouble-de-la-coagulation","category-la-maladie-de-willebrand","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>Appel mondial \u00e0 l\u2019action relatif \u00e0 la MW : des r\u00e9sultats prouv\u00e9s pour les personnes atteintes de la MW | 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\/appel-mondial-a-laction-relatif-a-la-mw-des-resultats-prouves-pour-les-personnes-atteintes-de-la-mw\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Appel mondial \u00e0 l\u2019action relatif \u00e0 la MW : des r\u00e9sultats prouv\u00e9s pour les personnes atteintes de la MW\" \/>\n<meta property=\"og:description\" content=\"En 2017, la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) lan\u00e7ait l\u2019Appel mondial \u00e0 l\u2019action relatif \u00e0 la MW pour renforcer la sensibilisation \u00e0 la maladie de Willebrand (MW) et permettre d\u2019am\u00e9liorer le diagnostic et la prise en charge clinique des personnes qui en sont atteintes dans le monde entier. Cette campagne a \u00e9t\u00e9 d\u00e9velopp\u00e9e dans le cadre du Programme d\u2019action Willebrand de la FMH, avec le soutien de plusieurs organisations nationales membres (ONM), dont le nombre a augment\u00e9 et regroupe aujourd\u2019hui l\u2019Afrique du Sud, l\u2019Australie, le Canada, les \u00c9tats-Unis, la Finlande, la France, l\u2019Inde, la Lettonie, la Malaisie, le Pakistan, le Panama, le Royaume-Uni, le Soudan et la Tunisie.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/fr\/article\/appel-mondial-a-laction-relatif-a-la-mw-des-resultats-prouves-pour-les-personnes-atteintes-de-la-mw\/\" \/>\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=\"2022-12-20T15:39:28+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-04-10T13:30:51+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/12\/Global-VWD-Call-to-Action-header.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"627\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\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\/appel-mondial-a-laction-relatif-a-la-mw-des-resultats-prouves-pour-les-personnes-atteintes-de-la-mw\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/appel-mondial-a-laction-relatif-a-la-mw-des-resultats-prouves-pour-les-personnes-atteintes-de-la-mw\/\"},\"author\":{\"name\":\"Mitch Semienchuk\",\"@id\":\"https:\/\/wfh.org\/fr\/#\/schema\/person\/4aea5b13c1966452a640eef39423925b\"},\"headline\":\"Appel mondial \u00e0 l\u2019action relatif \u00e0 la MW : des r\u00e9sultats prouv\u00e9s pour les personnes atteintes de la MW\",\"datePublished\":\"2022-12-20T15:39:28+00:00\",\"dateModified\":\"2024-04-10T13:30:51+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/appel-mondial-a-laction-relatif-a-la-mw-des-resultats-prouves-pour-les-personnes-atteintes-de-la-mw\/\"},\"wordCount\":502,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/fr\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/appel-mondial-a-laction-relatif-a-la-mw-des-resultats-prouves-pour-les-personnes-atteintes-de-la-mw\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/12\/Global-VWD-Call-to-Action-header.jpg\",\"articleSection\":[\"Femmes et filles atteintes d\u2019un trouble de la coagulation\",\"La maladie de Willebrand (MW)\"],\"inLanguage\":\"fr-FR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/wfh.org\/fr\/article\/appel-mondial-a-laction-relatif-a-la-mw-des-resultats-prouves-pour-les-personnes-atteintes-de-la-mw\/\",\"url\":\"https:\/\/wfh.org\/fr\/article\/appel-mondial-a-laction-relatif-a-la-mw-des-resultats-prouves-pour-les-personnes-atteintes-de-la-mw\/\",\"name\":\"Appel mondial \u00e0 l\u2019action relatif \u00e0 la MW : des r\u00e9sultats prouv\u00e9s pour les personnes atteintes de la MW | FMH - 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