{"id":227,"date":"2019-04-03T21:00:35","date_gmt":"2019-04-03T19:00:35","guid":{"rendered":"http:\/\/www.champ1.fr\/?page_id=227"},"modified":"2025-02-05T02:12:12","modified_gmt":"2025-02-05T01:12:12","slug":"presentation","status":"publish","type":"page","link":"https:\/\/www.champ1.fr\/index.php\/presentation\/","title":{"rendered":"Pr\u00e9sentation"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"227\" class=\"elementor elementor-227\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-529627d0 elementor-section-stretched elementor-section-height-min-height elementor-section-content-top elementor-section-boxed elementor-section-height-default elementor-section-items-middle\" data-id=\"529627d0\" data-element_type=\"section\" data-settings=\"{&quot;stretch_section&quot;:&quot;section-stretched&quot;}\">\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-dbe55a7\" data-id=\"dbe55a7\" 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-24e69002 elementor-widget elementor-widget-text-editor\" data-id=\"24e69002\" 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\t\t<p><\/p>\n<h3>Pr\u00e9sentation<\/h3>\n<p>Cette association a \u00e9t\u00e9 cr\u00e9\u00e9e en janvier 2019 par 2 familles fran\u00e7aises touch\u00e9es par des mutations sur le g\u00e8ne CHAMP1.<\/p>\n<p><\/p>\n<p>Les mutations sur le g\u00e8ne CHAMP1 sont responsables d\u2019un retard psychomoteur global d\u2019intensit\u00e9 variable d\u00e8s les premiers mois de vie fr\u00e9quemment accompagn\u00e9 d\u2019autres sympt\u00f4mes (digestifs, neurologiques, endocriniens, h\u00e9matologiques,\u2026).<\/p>\n<p><\/p>\n<p>Cette affection est dite ultra-rare puisqu\u2019elle ne touche que quelques familles dans le monde entier ( en 2025 moins de 10 en France, environ 200 dans le monde \u00e0 notre connaissance). Ces chiffres sont susceptibles d\u2019augmenter avec l\u2019essor du s\u00e9quen\u00e7age g\u00e9n\u00e9tique dans la d\u00e9marche diagnostique. <br><\/p><p>L\u2019association a pour objectif de&nbsp;:<\/p>\n<p><\/p>\n<ul class=\"wp-block-list\">\n<li>Repr\u00e9senter les familles confront\u00e9es \u00e0 une modification du g\u00e8ne CHAMP1 en France et d\u2019\u00eatre en lien avec les associations internationales des autres familles affect\u00e9es dans le monde.<\/li>\n<li>Contribuer \u00e0 l\u2019effort de recherche m\u00e9dicale et \u00e0 l\u2019am\u00e9lioration des pratiques de soins relatifs \u00e0 une modification du g\u00e8ne CHAMP1.<\/li>\n<li>Informer le public, le corps m\u00e9dical et les autorit\u00e9s sanitaires et sociales, de fa\u00e7on notamment \u00e0 am\u00e9liorer l\u2019\u00e9tat des connaissances scientifiques et m\u00e9dicales, faciliter le diagnostic et faire conna\u00eetre et reconna\u00eetre les modifications du g\u00e8ne CHAMP1 et leurs cons\u00e9quences.<\/li>\n<li>Soutenir des actions ou des projets favorisant l\u2019inclusion dans la soci\u00e9t\u00e9 des personnes porteuses d\u2019une modification du g\u00e8ne CHAMP1 ou de toutes autres affections responsables de handicap.<\/li>\n<\/ul>\n<p><\/p>\n<p><br><\/p>\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":"<div class=\"entry-summary\">\n<div class=\"entry-summary\">\nPr\u00e9sentation Cette association a \u00e9t\u00e9 cr\u00e9\u00e9e en janvier 2019 par 2 familles fran\u00e7aises touch\u00e9es par des mutations sur le g\u00e8ne CHAMP1. Les mutations sur le g\u00e8ne CHAMP1 sont responsables d\u2019un retard psychomoteur global d\u2019intensit\u00e9 variable d\u00e8s les premiers mois de&hellip;\n<\/div>\n<div class=\"link-more\"><a href=\"https:\/\/www.champ1.fr\/index.php\/presentation\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &ldquo;Pr\u00e9sentation&rdquo;<\/span>&hellip;<\/a><\/div>\n<\/div>\n<div class=\"link-more\"><a href=\"https:\/\/www.champ1.fr\/index.php\/presentation\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &ldquo;Pr\u00e9sentation&rdquo;<\/span>&hellip;<\/a><\/div>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-227","page","type-page","status-publish","hentry","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v24.2 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Pr\u00e9sentation &#183;<\/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:\/\/www.champ1.fr\/index.php\/presentation\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Pr\u00e9sentation &#183;\" \/>\n<meta property=\"og:description\" content=\"Pr\u00e9sentation Cette association a \u00e9t\u00e9 cr\u00e9\u00e9e en janvier 2019 par 2 familles fran\u00e7aises touch\u00e9es par des mutations sur le g\u00e8ne CHAMP1. 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