{"id":84,"date":"2024-09-18T18:28:00","date_gmt":"2024-09-18T16:28:00","guid":{"rendered":"http:\/\/afs-costello-cfc.asso.fr\/?page_id=84"},"modified":"2025-02-12T20:10:14","modified_gmt":"2025-02-12T19:10:14","slug":"presentation-de-lassociation","status":"publish","type":"page","link":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/presentation-de-lassociation\/","title":{"rendered":"Pr\u00e9sentation de l&rsquo;association"},"content":{"rendered":"\n<p><\/p>\n\n\n\n<div class=\"wp-block-columns alignfull are-vertically-aligned-center is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:40%\">\n<div class=\"wp-block-cover is-light\" style=\"min-height:600px;aspect-ratio:unset;\"><span aria-hidden=\"true\" class=\"wp-block-cover__background has-background-dim-100 has-background-dim\" style=\"background-color:#f6f6f6\"><\/span><div class=\"wp-block-cover__inner-container is-layout-flow wp-block-cover-is-layout-flow\"><div class=\"wp-block-image\">\n<figure class=\"aligncenter size-medium is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"200\" src=\"http:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2024\/09\/Home_Costello-300x200.jpg\" alt=\"\" class=\"wp-image-61\" style=\"width:346px;height:auto\" srcset=\"https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2024\/09\/Home_Costello-300x200.jpg 300w, https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2024\/09\/Home_Costello-1024x683.jpg 1024w, https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2024\/09\/Home_Costello-768x512.jpg 768w, https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2024\/09\/Home_Costello-1536x1024.jpg 1536w, https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2024\/09\/Home_Costello-2048x1365.jpg 2048w, https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2024\/09\/Home_Costello-360x240.jpg 360w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/figure>\n<\/div><\/div><\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\" style=\"padding-top:1em;padding-right:1em;padding-bottom:1em;padding-left:1em\">\n<h2 class=\"wp-block-heading has-accent-color has-text-color has-link-color wp-elements-77f8069e84176d2d3777dcf5fdc9a42a\"><strong>\u25a0 Une association, pour quoi faire ?<\/strong><\/h2>\n\n\n\n<h4 class=\"wp-block-heading\">Cette association a pour principaux objectifs :<\/h4>\n\n\n\n<ul class=\"wp-block-list\">\n<li>D\u2019aider les personnes handicap\u00e9es atteintes des syndromes de Costello et CFC et leurs familles<\/li>\n\n\n\n<li>De promouvoir et soutenir les voies de recherches en cours dans de nombreux pays par la diffusion de l\u2019information, la communication, la mise en r\u00e9seaux,<\/li>\n\n\n\n<li>De participer \u00e0 l\u2019information des parents, des milieux professionnels m\u00e9dicaux et \u00e9ducatifs, des partenaires institutionnels, des collectivit\u00e9s locales et du public<\/li>\n\n\n\n<li>De rechercher et mettre en \u0153uvre les moyens utiles \u00e0 la promotion de l\u2019\u00e9ducation des enfants et des adolescents atteints des syndromes de Costello et CFC et \u00e0 la recherche sur ces syndromes<\/li>\n\n\n\n<li>D\u2019assister \u00e0 tous congr\u00e8s, manifestations, colloques, r\u00e9unions ayant trait aux syndromes de Costello et CFC aussi bien en France qu\u2019\u00e0 l\u2019\u00e9tranger<\/li>\n\n\n\n<li>De prendre contact et \u00e9changer avec toutes associations fran\u00e7aises ou \u00e9trang\u00e8res s\u2019occupant des syndromes de Costello et CFC<\/li>\n\n\n\n<li>D\u2019assurer des rencontres entre parents<\/li>\n<\/ul>\n<\/div>\n<\/div>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-group alignfull has-background\" style=\"background-color:#8ec0cab8\"><div class=\"wp-block-group__inner-container is-layout-flow wp-block-group-is-layout-flow\">\n<div style=\"height:70px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-columns alignwide is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<p class=\"has-text-align-center has-text-color\" style=\"color:#000000;font-size:30px;line-height:1.1\">\u25a0 <strong>Soutenir l&rsquo;Association<\/strong><\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<hr class=\"wp-block-separator has-text-color has-css-opacity has-background is-style-wide\" style=\"background-color:#000000;color:#000000\"\/>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns alignwide is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:150px\"><\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\">\n<p class=\"has-text-align-left has-text-color has-extra-small-font-size\" style=\"color:#000000;font-style:normal;font-weight:500\">Pour atteindre ces objectifs nous avons besoin de votre soutien moral et\u2026 financier ; de notre c\u00f4t\u00e9, nous nous engageons \u00e0 vous adresser annuellement un petit bulletin d\u2019information pr\u00e9sentant la vie de notre association, ses actions et le progr\u00e8s de nos enfants.<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:600px\">\n<div class=\"wp-block-buttons is-horizontal is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-ecd33c62 wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button has-custom-width wp-block-button__width-50 has-custom-font-size has-medium-font-size\"><a class=\"wp-block-button__link has-accent-background-color has-background has-text-align-center wp-element-button\" href=\"https:\/\/www.helloasso.com\/associations\/association-francaise-des-syndromes-de-costello-et-cfc\/adhesions\/adhesion-afs-c-et-cfc-et-don\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Adh\u00e9rer ou f<b>aire un don<\/b><\/strong><\/a><\/div>\n<\/div>\n\n\n\n<p class=\"has-text-color has-extra-small-font-size\" style=\"color:#000000\"><\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50px\"><\/div>\n<\/div>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n<\/div><\/div>\n\n\n\n<div style=\"height:68px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-columns alignfull are-vertically-aligned-center is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50px\"><\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\" style=\"padding-top:1em;padding-right:1em;padding-bottom:1em;padding-left:1em\">\n<h2 class=\"wp-block-heading has-accent-color has-text-color has-link-color wp-elements-2da217e438d002aa5854936580cae655\"><strong>\u25a0 Pourquoi une seule association pour ces deux syndromes ?<\/strong><\/h2>\n\n\n\n<p style=\"font-style:normal;font-weight:500\">Les mutations g\u00e9n\u00e9tiques d\u00e9couvertes r\u00e9cemment , dans le&nbsp;<strong>syndrome de Costello&nbsp;<\/strong>(g\u00e8ne H-RAS localis\u00e9 en 11p15.5) et le&nbsp;<strong>syndrome<\/strong>&nbsp;<strong>cardio-facio-cutan\u00e9 (CFC)<\/strong>&nbsp;(g\u00e8nes BRAF, K-RAS, MAP2K1, MAP2K2 localis\u00e9s en&nbsp; 7q34,&nbsp;12p12.1,&nbsp;15q21&nbsp;et&nbsp;7q32) int\u00e9ressent la m\u00eame voie de signalisation intracellulaire (voie des RAS-MAP Kinases), ce qui peut donc conduire \u00e0 des probl\u00e8mes assez identiques chez les enfants.<\/p>\n\n\n\n<p style=\"font-style:normal;font-weight:500\"><strong>Il a sembl\u00e9 plus efficace aux familles dans lesquelles ces syndromes avaient \u00e9t\u00e9 d\u00e9tect\u00e9s de se r\u00e9unir pour conjuguer leurs efforts.<\/strong><\/p>\n\n\n\n<p style=\"font-style:normal;font-weight:500\">Les cas sont sporadiques, ce qui est concordant avec une mutation g\u00e9n\u00e9tique accidentelle. Malgr\u00e9 le risque de r\u00e9cidive faible, un diagnostic pr\u00e9natal peut \u00eatre propos\u00e9 aux couples ayant d\u00e9j\u00e0 un enfant porteur d\u2019une mutation identifi\u00e9e de ces g\u00e8nes.<\/p>\n\n\n\n<div style=\"height:30px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-a89b3969 wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-white-color has-text-color has-background has-link-color wp-element-button\" href=\"https:\/\/afs-costello-cfc.asso.fr\/index.php\/a-propos-de-lassociation\/\" style=\"background-color:#69b6c0\"><strong>Consulter les documents de l&rsquo;association<\/strong><\/a><\/div>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:40%\">\n<div class=\"wp-block-cover is-light\" style=\"min-height:600px;aspect-ratio:unset;\"><span aria-hidden=\"true\" class=\"wp-block-cover__background has-background-dim-100 has-background-dim\" style=\"background-color:#f6f6f6\"><\/span><div class=\"wp-block-cover__inner-container is-layout-flow wp-block-cover-is-layout-flow\"><div class=\"wp-block-image\">\n<figure class=\"aligncenter size-medium is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"200\" src=\"http:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2024\/09\/Home_Costello-300x200.jpg\" alt=\"\" class=\"wp-image-61\" style=\"width:346px;height:auto\" srcset=\"https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2024\/09\/Home_Costello-300x200.jpg 300w, https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2024\/09\/Home_Costello-1024x683.jpg 1024w, https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2024\/09\/Home_Costello-768x512.jpg 768w, https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2024\/09\/Home_Costello-1536x1024.jpg 1536w, https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2024\/09\/Home_Costello-2048x1365.jpg 2048w, https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2024\/09\/Home_Costello-360x240.jpg 360w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/figure>\n<\/div><\/div><\/div>\n<\/div>\n<\/div>\n\n\n\n<div style=\"height:82px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-group alignfull has-background-color-background-color has-background\"><div class=\"wp-block-group__inner-container is-layout-flow wp-block-group-is-layout-flow\">\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-columns alignwide is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:100%\">\n<p class=\"has-text-align-center has-text-color\" style=\"color:#000000;font-size:20px;line-height:1.1\"><strong>Vous souhaitez avoir des informations compl\u00e9mentaires ?<\/strong><\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns alignwide is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-a89b3969 wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-accent-background-color has-background wp-element-button\" href=\"http:\/\/afs-costello-cfc.asso.fr\/#contact\"><strong><b>Contactez<\/b>&#8211;<b>nous<\/b><\/strong><\/a><\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n<\/div><\/div>\n\n\n\n<div style=\"height:90px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n","protected":false},"excerpt":{"rendered":"<p>\u25a0 Une association, pour quoi faire ? Cette association a pour principaux objectifs : \u25a0 Soutenir l&rsquo;Association Pour atteindre ces objectifs nous avons besoin de votre soutien moral et\u2026 financier ; de notre c\u00f4t\u00e9, nous nous engageons \u00e0 vous adresser annuellement un petit bulletin d\u2019information pr\u00e9sentant la vie de notre [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":61,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_themeisle_gutenberg_block_has_review":false,"footnotes":""},"class_list":["post-84","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/pages\/84","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/comments?post=84"}],"version-history":[{"count":55,"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/pages\/84\/revisions"}],"predecessor-version":[{"id":389,"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/pages\/84\/revisions\/389"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/media\/61"}],"wp:attachment":[{"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/media?parent=84"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}