{"id":448,"date":"2022-07-10T11:24:00","date_gmt":"2022-07-10T09:24:00","guid":{"rendered":"https:\/\/kleefstrasyndrome.com\/?p=448"},"modified":"2026-08-19T15:22:02","modified_gmt":"2026-08-19T13:22:02","slug":"idefine-europe","status":"publish","type":"post","link":"https:\/\/kleefstrasyndrome.com\/fr\/idefine-europe\/","title":{"rendered":"Cr\u00e9ation d&#x27;IDefine Europe pour la communaut\u00e9 europ\u00e9enne des personnes atteintes du syndrome de Kleefstra"},"content":{"rendered":"<div class=\"wp-block-group idefine-europe-page\"><div class=\"wp-block-group__inner-container is-layout-constrained wp-block-group-is-layout-constrained\">\n<div class=\"wp-block-columns idefine-europe-intro is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:45%\">\n<figure class=\"wp-block-image size-full\"><img fetchpriority=\"high\" decoding=\"async\" width=\"940\" height=\"788\" src=\"http:\/\/kleefstrasyndrome.com\/wp-content\/uploads\/2022\/08\/idefine-europe-1.png\" alt=\"\" class=\"wp-image-452\" srcset=\"https:\/\/kleefstrasyndrome.com\/wp-content\/uploads\/2022\/08\/idefine-europe-1.png 940w, https:\/\/kleefstrasyndrome.com\/wp-content\/uploads\/2022\/08\/idefine-europe-1-600x503.png 600w, https:\/\/kleefstrasyndrome.com\/wp-content\/uploads\/2022\/08\/idefine-europe-1-450x377.png 450w, https:\/\/kleefstrasyndrome.com\/wp-content\/uploads\/2022\/08\/idefine-europe-1-768x644.png 768w\" sizes=\"(max-width: 940px) 100vw, 940px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:55%\">\n<p class=\"wp-block-paragraph\">R\u00e9cemment, la <strong>Tanja Zdol\u0161ek Draksler<\/strong> s&#x27;est charg\u00e9 de sa cr\u00e9ation <strong><a href=\"https:\/\/idefine-europe.org\/\" data-type=\"link\" data-id=\"https:\/\/idefine-europe.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">IDefine Europe<\/a><\/strong>, dans le but de soutenir la communaut\u00e9 des personnes atteintes du syndrome de Kleefstra en Europe. Tanja est une chercheuse dynamique et infatigable, mais aussi la m\u00e8re d\u2019un enfant atteint du syndrome de Kleefstra. Son exp\u00e9rience personnelle, associ\u00e9e \u00e0 son engagement au sein de la communaut\u00e9 internationale, l\u2019a amen\u00e9e \u00e0 s\u2019investir activement dans la sensibilisation, la mise en r\u00e9seau des familles et la promotion de la recherche sur ce syndrome.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">D&#x27;apr\u00e8s Tanja, elle a choisi ce pr\u00e9nom <strong>IDefine Europe<\/strong> car elle collabore depuis 2020 avec l&#x27;association \u00e0 but non lucratif <strong>IDefine<\/strong>, dont le si\u00e8ge se trouve aux \u00c9tats-Unis. Ces deux organisations partagent des objectifs communs et s&#x27;efforcent de soutenir les familles et la recherche sur le syndrome de Kleefstra \u00e0 l&#x27;\u00e9chelle internationale. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Il est important de disposer d\u2019une pr\u00e9sence structur\u00e9e tant aux \u00c9tats-Unis qu\u2019en Europe, car ces deux r\u00e9gions ont des syst\u00e8mes de sant\u00e9 diff\u00e9rents, un cadre institutionnel diff\u00e9rent et des possibilit\u00e9s diff\u00e9rentes en mati\u00e8re de soutien aux actions en faveur des maladies rares.<\/p>\n<\/div>\n<\/div>\n\n\n\n<p class=\"wp-block-paragraph\">\u0397 <strong>IDefine<\/strong> et la <strong>IDefine Europe<\/strong> Ils aspirent \u00e0 rapprocher encore davantage les familles, les chercheurs et les professionnels impliqu\u00e9s dans la prise en charge du syndrome de Kleefstra et \u00e0 contribuer \u00e0 la cr\u00e9ation d&#x27;une communaut\u00e9 internationale plus forte.<\/p>\n\n\n\n<p class=\"community-note wp-block-paragraph\">Gr\u00e2ce \u00e0 cette collaboration, il sera possible de cr\u00e9er davantage d&#x27;opportunit\u00e9s pour <strong>information, participation \u00e0 la recherche, partage d&#x27;exp\u00e9riences et meilleure prise en compte des besoins des personnes atteintes du syndrome de Kleefstra et de leurs familles.<\/strong><\/p>\n<\/div><\/div>","protected":false},"excerpt":{"rendered":"<p>R\u00e9cemment, Tanja Zdol\u0161ek Draksler a pris la t\u00eate de la cr\u00e9ation d\u2019IDefine Europe, dans le but de renforcer\u2026<\/p>","protected":false},"author":1,"featured_media":2256,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"aside","meta":{"_coblocks_attr":"","_coblocks_dimensions":"","_coblocks_responsive_height":"","_coblocks_accordion_ie_support":"","footnotes":""},"categories":[28],"tags":[],"class_list":["post-448","post","type-post","status-publish","format-aside","has-post-thumbnail","hentry","category-news","post_format-post-format-aside"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>\u0394\u03b7\u03bc\u03b9\u03bf\u03c5\u03c1\u03b3\u03af\u03b1 \u03c4\u03b7\u03c2 IDefine Europe \u03b3\u03b9\u03b1 \u03c4\u03b7\u03bd \u03b5\u03c5\u03c1\u03c9\u03c0\u03b1\u03ca\u03ba\u03ae \u03ba\u03bf\u03b9\u03bd\u03cc\u03c4\u03b7\u03c4\u03b1 \u03c4\u03bf\u03c5 \u03c3\u03c5\u03bd\u03b4\u03c1\u03cc\u03bc\u03bf\u03c5 Kleefstra - \u03a4\u03bf 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