{"id":39980,"date":"2023-11-24T07:40:54","date_gmt":"2023-11-24T12:40:54","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2023\/11\/24\/bienvenue-aux-nouveaux-membres-et-aux-membres-actuels-de-notre-comite-consultatif-communautaire\/"},"modified":"2024-01-29T10:01:54","modified_gmt":"2024-01-29T15:01:54","slug":"bienvenue-aux-nouveaux-membres-et-aux-membres-actuels-de-notre-comite-consultatif-communautaire","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/fr\/2023\/11\/24\/bienvenue-aux-nouveaux-membres-et-aux-membres-actuels-de-notre-comite-consultatif-communautaire\/","title":{"rendered":"Bienvenue aux nouveaux membres et aux membres actuels de notre comit\u00e9 consultatif communautaire"},"content":{"rendered":"<p><span class=\"notranslate\">Simons Searchlight<\/span> est un partenariat de chercheurs de premier plan, de m\u00e9decins, de leaders de la d\u00e9fense des patients, de cliniciens, de participants et de familles, d\u00e9termin\u00e9s \u00e0 acc\u00e9l\u00e9rer la science et \u00e0 am\u00e9liorer la vie des personnes atteintes de troubles g\u00e9n\u00e9tiques rares du d\u00e9veloppement neurologique. Dans le cadre de cette mission, <span class=\"notranslate\">Simons Searchlight<\/span> travaille avec un comit\u00e9 consultatif communautaire (CCC) dont l&#8217;objectif est de conseiller et d&#8217;orienter la recherche et les activit\u00e9s communautaires au nom de tous les participants \u00e0 <span class=\"notranslate\">Simons Searchlight<\/span> et des communaut\u00e9s g\u00e9n\u00e9tiques.<\/p>\n<p>Nous remercions chaleureusement les quelque 200 personnes qui ont pos\u00e9 leur candidature pour faire partie de notre comit\u00e9 consultatif communautaire (CCC). Chaque proposition r\u00e9fl\u00e9chie a \u00e9t\u00e9 r\u00e9ellement appr\u00e9ci\u00e9e et prise en compte. Le CCC centralise les voix des participants et fa\u00e7onne notre programme de recherche. Accueillons notre CAC au complet.<\/p>\n<p><strong>Nouveaux membres du comit\u00e9 (mandat jusqu&#8217;en novembre 2025) :<\/strong><\/p>\n<ul>\n<li>Christie Abercrombie (repr\u00e9sentant 16p Duplication)<\/li>\n<li>April Canter (repr\u00e9sentant ASXL3)<\/li>\n<li>Jacquelyn Cattage (repr\u00e9sentant le SETD5)<\/li>\n<li>Rebeca Ridings Figueroa (repr\u00e9sentant la Cure CLCN4)<\/li>\n<li>Alida James-Fenner (repr\u00e9sentant la Fondation MAND)<\/li>\n<li>Adrienne Gilligan (repr\u00e9sentant l&#8217;ARID1B)<\/li>\n<li>Piotr Kosla (repr\u00e9sentant de la Fondation de recherche PACS2)<\/li>\n<li>Ashley Point (repr\u00e9sentant la Fondation KdVS)<\/li>\n<li>Elizabeth Spitzer (repr\u00e9sentant l&#8217;association DYNC1H1)<\/li>\n<\/ul>\n<p><strong>Membres actuels du comit\u00e9 (dernier mandat jusqu&#8217;en novembre 2024) :<\/strong><\/p>\n<ul>\n<li>Kathy Bergwerk (repr\u00e9sentant le SETBP1)<\/li>\n<li>Cecilia Dignani (repr\u00e9sentant TAOK1)<\/li>\n<li>Sarah DiSalvatore (repr\u00e9sentant DDX3X)<\/li>\n<li>Rebecca Dolan (repr\u00e9sentant CSNK2B)<\/li>\n<li>Dina Gerber (repr\u00e9sentant KDM5B)<\/li>\n<li>Stacey Hanna (repr\u00e9sentant la d\u00e9l\u00e9tion 16p)<\/li>\n<li>Alain Lartigue (Repr\u00e9sentant EP300\/RTS 2)<\/li>\n<li>Alexandra Lee (repr\u00e9sentant CSNK2A1)<\/li>\n<li>Marissa Mitchel (repr\u00e9sentant la d\u00e9l\u00e9tion NRXN1\/2p16.3)<\/li>\n<li>Gilianne Nelissen (repr\u00e9sentant le GRIN2B Europe)<\/li>\n<li>Laura Palmer (repr\u00e9sentant le syndrome SHINE)<\/li>\n<li>Cheryl Richt (repr\u00e9sentant la Fondation FOXP1)<\/li>\n<\/ul>\n<p><strong>Pour faire connaissance avec nos estim\u00e9s membres du CCC, visitez notre <a href=\"https:\/\/www.simonssearchlight.org\/fr\/a-propos-de\/comite-consultatif-communautaire\/\" target=\"_blank\" rel=\"noopener\">page web du CCC<\/a>.<\/strong> Nous sommes ravis de continuer \u00e0 travailler avec des personnes aussi d\u00e9vou\u00e9es et passionn\u00e9es.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-large wp-image-37187\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/01\/23100254\/CAC-graphic-for-website-1-1024x576.png\" alt=\"\" width=\"1024\" height=\"576\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/01\/23100254\/CAC-graphic-for-website-1-1024x576.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/01\/23100254\/CAC-graphic-for-website-1-300x169.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/01\/23100254\/CAC-graphic-for-website-1-768x432.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/01\/23100254\/CAC-graphic-for-website-1-1536x864.png 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/01\/23100254\/CAC-graphic-for-website-1.png 1920w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Rencontrez les membres de notre CAC, qui jouent un r\u00f4le essentiel dans l&#8217;orientation de Simons Searchlight.<\/p>\n","protected":false},"author":18,"featured_media":39990,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[196,199],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/39980"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/users\/18"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/comments?post=39980"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/39980\/revisions"}],"predecessor-version":[{"id":39993,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/39980\/revisions\/39993"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/media\/39990"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/media?parent=39980"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/categories?post=39980"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/tags?post=39980"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}