{"id":25263,"date":"2021-02-11T09:00:00","date_gmt":"2021-02-11T14:00:00","guid":{"rendered":"https:\/\/wfh.org\/la-fondation-du-kosovo-pour-lhemophilie-rejoint-la-fmh\/"},"modified":"2024-04-22T09:28:24","modified_gmt":"2024-04-22T13:28:24","slug":"la-fondation-du-kosovo-pour-lhemophilie-rejoint-la-fmh","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/la-fondation-du-kosovo-pour-lhemophilie-rejoint-la-fmh\/","title":{"rendered":"La Fondation du Kosovo pour l\u2019h\u00e9mophilie rejoint la FMH"},"content":{"rendered":"\t\t
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Le 16 octobre 2020, lors de\u00a0l\u2019Assembl\u00e9e g\u00e9n\u00e9rale annuelle<\/a>\u00a0de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie, la Fondation du Kosovo pour l\u2019h\u00e9mophilie (KOHA F) a re\u00e7u le statut d\u2019organisation nationale membre (ONM) associ\u00e9e, portant le total des ONM de la FMH dans le monde entier \u00e0 147.<\/p>\n

La Fondation du Kosovo pour l\u2019h\u00e9mophilie (KOHA F) est n\u00e9e d\u2019un projet tr\u00e8s personnel. Sa fondatrice et actuelle pr\u00e9sidente, Elmedina Kukaj, a vu son jeune fr\u00e8re souffrir d\u2019h\u00e9mophilie pendant son enfance. Cette exp\u00e9rience a renforc\u00e9 sa r\u00e9solution d\u2019aider les personnes atteintes d\u2019h\u00e9mophilie dans son pays. Toujours \u00e0 la recherche de ressources pour l\u2019aider \u00e0 mieux comprendre cette maladie, elle a trouv\u00e9 la page\u00a0Facebook de la FMH<\/a>\u00a0en 2018 et a d\u00e9cid\u00e9 de nous contacter. \u00ab\u00a0J\u2019ai re\u00e7u une r\u00e9ponse du directeur r\u00e9gional europ\u00e9en de la FMH\u00a0\u00bb, explique-t-elle, impressionn\u00e9e. Quelques jours plus tard, elle a re\u00e7u un appel, et c\u2019est l\u00e0 que l\u2019id\u00e9e de former un groupe de patient\u00b7es et de le pr\u00e9parer pour l\u2019accr\u00e9ditation par la FMH est n\u00e9e.<\/p>\n

Au d\u00e9but, la difficult\u00e9 principale pour Mme Kukaj a tout simplement \u00e9t\u00e9 de trouver d\u2019autres patient\u00b7es. En effet, au Kosovo, les personnes atteintes d\u2019un trouble de la coagulation ont souvent peur ou honte de le dire. Mme Kukaj a fini par travailler avec un couple dont le fils \u00e9tait atteint d\u2019h\u00e9mophilie, et ils ont cr\u00e9\u00e9 ensemble la Fondation du Kosovo pour l\u2019h\u00e9mophilie, avec le soutien de professionnel\u00b7les de sant\u00e9. Actuellement, la KOHA F est dirig\u00e9e par un conseil d\u2019administration comprenant des membres m\u00e9dicaux et non-m\u00e9dicaux.<\/p>\n

Mme Kukaj est convaincue que le partenariat avec la FMH aidera son fr\u00e8re et les membres de la communaut\u00e9 des troubles de la coagulation au Kosovo \u00e0 vivre une vie plus normale. \u00ab\u00a0Mon fr\u00e8re a beaucoup souffert. Il n\u2019y avait pas de traitement disponible avant des mois, et il devait s\u2019absenter de l\u2019\u00e9cole. Je souhaite que lui et la communaut\u00e9 des troubles de la coagulation du Kosovo sachent qu\u2019ils ne sont pas diff\u00e9rents de nous. Il faut qu\u2019ils comprennent qu\u2019ils peuvent vivre une vie normale, travailler et aller \u00e0 l\u2019\u00e9cole.\u00a0\u00bb<\/p>\n

Mme Kukaj \u00e9tait ravie lorsque la KOHA F a \u00e9t\u00e9 officiellement reconnue comme ONM associ\u00e9e de la FMH, lors de l\u2019assembl\u00e9e g\u00e9n\u00e9rale annuelle de la FMH. Elle raconte avoir imm\u00e9diatement appel\u00e9 tous les m\u00e9decins et toutes les personnes qui l\u2019ont aid\u00e9e \u00e0 cr\u00e9er cette organisation pour leur annoncer la nouvelle. L\u2019organisation \u00e9tant \u00e0 pr\u00e9sent accr\u00e9dit\u00e9e, elle veut se concentrer sur les \u00e9tapes suivantes, notamment l\u2019\u00e9tablissement d\u2019un centre de traitement de l\u2019h\u00e9mophilie (CTH) et d\u2019un registre des patient\u00b7es.<\/p>\n

La FMH a h\u00e2te de travaille avec la Fondation du Kosovo pour l\u2019h\u00e9mophilie pour permettre un meilleur acc\u00e8s aux soins et au traitement pour la communaut\u00e9 des troubles de la coagulation au Kosovo.<\/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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Membres de la FMH et de la KOHA F<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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R\u00e9union entre responsables gouvernementaux, responsables de la KOHA F et FMH<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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R\u00e9union entre professionnel\u00b7les de sant\u00e9, responsables de la KOHA F et FMH<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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A physiotherapist examining a PWH during a hospital visit<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\u201cHelping others in their times of need is the best gift to humanity\u201d, Elmedina Kukaj, President KOHA F.<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Le 16 octobre 2020, lors de l\u2019Assembl\u00e9e g\u00e9n\u00e9rale annuelle de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie, la Fondation du Kosovo pour l\u2019h\u00e9mophilie (KOHA F) a re\u00e7u le statut d\u2019organisation nationale membre (ONM) associ\u00e9e, portant le total des ONM de la FMH dans le monde entier \u00e0 147.<\/p>\n","protected":false},"author":3,"featured_media":15390,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[171,172],"tags":[],"search-category":[],"class_list":["post-25263","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualites-de-la-fmh","category-nmo-training-fr"],"yoast_head":"\nLa Fondation du Kosovo pour l\u2019h\u00e9mophilie rejoint la FMH | 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-fondation-du-kosovo-pour-lhemophilie-rejoint-la-fmh\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"La Fondation du Kosovo pour l\u2019h\u00e9mophilie rejoint la FMH\" \/>\n<meta property=\"og:description\" content=\"Le 16 octobre 2020, lors de l\u2019Assembl\u00e9e g\u00e9n\u00e9rale annuelle de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie, la Fondation du Kosovo pour l\u2019h\u00e9mophilie (KOHA F) a re\u00e7u le statut d\u2019organisation nationale membre (ONM) associ\u00e9e, portant le total des ONM de la FMH dans le monde entier \u00e0 147.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/fr\/article\/la-fondation-du-kosovo-pour-lhemophilie-rejoint-la-fmh\/\" \/>\n<meta property=\"og:site_name\" content=\"FMH - 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