{"id":135146,"date":"2025-02-27T08:30:57","date_gmt":"2025-02-27T13:30:57","guid":{"rendered":"https:\/\/wfh.org\/article\/au-venezuela-laide-de-la-fmh-permet-de-sauver-la-vie-dun-jeune\/"},"modified":"2025-03-03T09:52:05","modified_gmt":"2025-03-03T14:52:05","slug":"au-venezuela-laide-de-la-fmh-permet-de-sauver-la-vie-dun-jeune","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/au-venezuela-laide-de-la-fmh-permet-de-sauver-la-vie-dun-jeune\/","title":{"rendered":"Au Venezuela, l\u2019aide de la FMH permet de sauver la vie d\u2019un jeune"},"content":{"rendered":"\t\t
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La FMH travaille en \u00e9troite collaboration avec les membres de la communaut\u00e9 des troubles h\u00e9r\u00e9ditaires de la coagulation au Venezuela, pour permettre de rendre les soins durables. Les initiatives au niveau national comprennent notamment une collaboration avec l\u2019organisation nationale membre (ONM), l\u2019Asociaci\u00f3n Venezolana para la Hemofilia, et la mise en \u0153uvre de plusieurs programmes cl\u00e9s de la FMH, comme le Programme d\u2019aide humanitaire<\/a> et des programmes nationaux. La communaut\u00e9 m\u00e9dicale du Venezuela collabore elle aussi avec la FMH en fournissant des donn\u00e9es au Sondage mondial annuel (SMA) et en participant au Registre mondial des troubles de la coagulation (RMTC).<\/p>\n

Ce gar\u00e7on originaire de l\u2019\u00c9tat d\u2019Aragua a connu un revirement incroyable en ce qui concerne sa sant\u00e9 et sa vie quotidienne, gr\u00e2ce \u00e0 un don de produit non substitutif par le Programme. On a diagnostiqu\u00e9 \u00e0 ce patient un trouble de la coagulation lorsqu\u2019il \u00e9tait tr\u00e8s jeune, et il re\u00e7oit des soins depuis 2007, mais a travers\u00e9 de grandes difficult\u00e9s pendant son parcours. Lorsqu\u2019il n\u2019avait que cinq ans, il a connu un \u00e9pisode de saignement aigu apr\u00e8s s\u2019\u00eatre mordu la langue, ce qui a n\u00e9cessit\u00e9 une transfusion d\u2019urgence. Au fil des ann\u00e9es, il a \u00e9t\u00e9 trait\u00e9 avec diverses th\u00e9rapies, notamment une induction de la tol\u00e9rance immune en 2013 qui a d\u00fb \u00eatre arr\u00eat\u00e9e \u00e0 cause de difficult\u00e9s \u00e0 suivre le protocole. Il a repris le traitement en 2016 mais a continu\u00e9 \u00e0 souffrir de saignements aigus r\u00e9guliers.<\/p>\n

En avril 2022, les m\u00e9decins ont commenc\u00e9 \u00e0 traiter le jeune homme avec une th\u00e9rapie non substitutive. Presque tout de suite, son \u00e9tat s\u2019est am\u00e9lior\u00e9. Depuis le d\u00e9but de cette th\u00e9rapie, il a de moins en moins de saignements et cela lui permet de vivre une vie plus normale. L\u2019h\u00e9mophilie l\u2019avait forc\u00e9 \u00e0 abandonner ses \u00e9tudes apr\u00e8s la deuxi\u00e8me ann\u00e9e de lyc\u00e9e, mais d\u00e9sormais, comme sa sant\u00e9 est plus stable, il a pu reprendre sa scolarit\u00e9 et devrait bient\u00f4t obtenir son dipl\u00f4me.<\/p>\n

L\u2019histoire de ce patient souligne l\u2019impact essentiel de l\u2019aide de la FMH. Gr\u00e2ce \u00e0 des programmes ciblant la cr\u00e9ation de soins durables, et des dons de produits fournis par le programme d\u2019aide humanitaire, les jeunes atteint\u00b7es d\u2019un trouble de la coagulation dans les \u00e9conomies \u00e9mergentes peuvent esp\u00e9rer un avenir meilleur.<\/p>\n

Depuis 2015, le Programme d\u2019aide humanitaire a fait don de plus de 149\u00a0000 d\u2019UI de facteur et de plus de 653\u00a0000 mg de produits non substitutifs au Venezuela. Rien qu\u2019en 2024, le Venezuela a re\u00e7u plus de 8\u00a0000 UI de facteur et plus de 190\u00a0000 mg de produits non substitutifs. Pour en savoir plus sur le Programme d\u2019aide humanitaire de la FMH, 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

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\u00c0 propos du Programme d\u2019aide humanitaire de la FMH<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Le Programme d\u2019aide humanitaire de la FMH am\u00e9liore l\u2019acc\u00e8s aux soins et aux traitements en fournissant un soutien essentiel aux personnes atteintes de troubles h\u00e9r\u00e9ditaires de la coagulation dans les pays en d\u00e9veloppement. En apportant aux patient\u00b7es un flux plus r\u00e9gulier et plus pr\u00e9visible de dons humanitaires, le Programme d\u2019aide humanitaire de la FMH leur permet un acc\u00e8s constant et fiable aux traitements et aux soins. Rien de tout cela ne serait possible sans le g\u00e9n\u00e9reux soutien de Sanofi et Sobi, nos Donateurs visionnaires fondateurs ; de Bayer, CSL Behring et Roche, nos Donateurs visionnaires ; de Grifols, notre Donateur encadrant, et de Takeda, notre Donateur contributeur. Pour plus d\u2019informations sur le Programme d\u2019aide humanitaire de la FMH, consultez le site\u00a0www.treatmentforall.org<\/a>.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\"\"\t\t\t\t\t\t\t\t<\/a>\n\t\t\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\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

La F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) propose son soutien aux pays afin de les aider \u00e0 intensifier les soins \u00e0 l\u2019ensemble de leur communaut\u00e9 des troubles h\u00e9r\u00e9ditaires de la coagulation. Si l\u2019objectif est d\u2019aider chacune de ces communaut\u00e9s dans son int\u00e9gralit\u00e9, il est toujours tr\u00e8s encourageant d\u2019entendre les r\u00e9cits individuels qui montrent comment des vies s\u2019am\u00e9liorent gr\u00e2ce aux efforts de la FMH. Au Venezuela, l\u2019aide de la F\u00e9d\u00e9ration a permis de changer radicalement la vie d\u2019un gar\u00e7on de 17 ans.<\/p>\n","protected":false},"author":13,"featured_media":134727,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[336,184],"tags":[],"search-category":[85],"class_list":["post-135146","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-2-fr","category-programme-daide-humanitaire-de-la-fmh","search-category-article"],"yoast_head":"\nAu Venezuela, l\u2019aide de la FMH permet de sauver la vie d\u2019un jeune | 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\/au-venezuela-laide-de-la-fmh-permet-de-sauver-la-vie-dun-jeune\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Au Venezuela, l\u2019aide de la FMH permet de sauver la vie d\u2019un jeune\" \/>\n<meta property=\"og:description\" content=\"La F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) propose son soutien aux pays afin de les aider \u00e0 intensifier les soins \u00e0 l\u2019ensemble de leur communaut\u00e9 des troubles h\u00e9r\u00e9ditaires de la coagulation. Si l\u2019objectif est d\u2019aider chacune de ces communaut\u00e9s dans son int\u00e9gralit\u00e9, il est toujours tr\u00e8s encourageant d\u2019entendre les r\u00e9cits individuels qui montrent comment des vies s\u2019am\u00e9liorent gr\u00e2ce aux efforts de la FMH. Au Venezuela, l\u2019aide de la F\u00e9d\u00e9ration a permis de changer radicalement la vie d\u2019un gar\u00e7on de 17 ans.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/fr\/article\/au-venezuela-laide-de-la-fmh-permet-de-sauver-la-vie-dun-jeune\/\" \/>\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=\"2025-02-27T13:30:57+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-03-03T14:52:05+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2025\/02\/Venezuela-Emicizumab-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=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/wfh.org\/fr\/article\/au-venezuela-laide-de-la-fmh-permet-de-sauver-la-vie-dun-jeune\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/au-venezuela-laide-de-la-fmh-permet-de-sauver-la-vie-dun-jeune\/\"},\"author\":{\"name\":\"Mitch Semienchuk\",\"@id\":\"https:\/\/wfh.org\/fr\/#\/schema\/person\/4aea5b13c1966452a640eef39423925b\"},\"headline\":\"Au Venezuela, l\u2019aide de la FMH permet de sauver la vie d\u2019un jeune\",\"datePublished\":\"2025-02-27T13:30:57+00:00\",\"dateModified\":\"2025-03-03T14:52:05+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/au-venezuela-laide-de-la-fmh-permet-de-sauver-la-vie-dun-jeune\/\"},\"wordCount\":636,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/fr\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/au-venezuela-laide-de-la-fmh-permet-de-sauver-la-vie-dun-jeune\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2025\/02\/Venezuela-Emicizumab-header.jpg\",\"articleSection\":[\"Featured 2 - 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