{"id":37987,"date":"2018-05-03T14:54:20","date_gmt":"2018-05-03T18:54:20","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/ressources\/"},"modified":"2026-03-24T14:00:21","modified_gmt":"2026-03-24T18:00:21","slug":"ressources","status":"publish","type":"page","link":"https:\/\/www.simonssearchlight.org\/fr\/ressources\/","title":{"rendered":"Ressources"},"content":{"rendered":"<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-15139 alignnone\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091933\/PEOPLE_desk-family-e1707309126417.png\" alt=\"\" width=\"300\" height=\"300\"><\/p>\n<h4>Il s&#8217;agit de votre point de d\u00e9part pour en savoir plus sur les maladies g\u00e9n\u00e9tiques \u00e9tudi\u00e9es par <span class=\"notranslate\">Simons Searchlight<\/span>. Nous mettons r\u00e9guli\u00e8rement ces pages \u00e0 jour avec de nouvelles recherches et informations pour les familles.<\/h4>\n<h2 data-section-id=\"1vyrq35\" data-start=\"489\" data-end=\"530\">Comprendre la g\u00e9n\u00e9tique et les pathologies<\/h2>\n<p data-start=\"531\" data-end=\"605\">Construire une base pour mieux comprendre votre diagnostic et les sujets qui s&#8217;y rapportent.<\/p>\n<ul data-start=\"607\" data-end=\"904\">\n<li data-section-id=\"ht2x7k\" data-start=\"607\" data-end=\"693\"><a href=\"https:\/\/www.simonssearchlight.org\/fr\/processus-de-recherche\/les-maladies-genetiques-que-nous-etudions\/\" target=\"_blank\" rel=\"noopener\"><strong>Ce que nous \u00e9tudions<\/strong><\/a> &#8211; Aper\u00e7u des variantes g\u00e9n\u00e9tiques \u00e9tudi\u00e9es dans <span class=\"notranslate\">Simons Searchlight<\/span><\/li>\n<li data-section-id=\"1ovoc91\" data-start=\"694\" data-end=\"775\"><a href=\"https:\/\/www.simonssearchlight.org\/fr\/ressources\/faq-sur-la-genetique\/\" target=\"_blank\" rel=\"noopener\"><strong>FAQ sur la g\u00e9n\u00e9tique<\/strong><\/a> &#8211; En savoir plus sur les chromosomes, les g\u00e8nes, les CNV et les variants g\u00e9n\u00e9tiques<\/li>\n<li data-section-id=\"156c13p\" data-start=\"776\" data-end=\"838\"><a href=\"https:\/\/www.simonssearchlight.org\/fr\/ressources\/quest-ce-que-lautisme\/\" target=\"_blank\" rel=\"noopener\"><strong>Qu&#8217;est-ce que l&#8217;autisme ?<\/strong><\/a>  &#8211; Aper\u00e7u des troubles du spectre autistique<\/li>\n<li data-section-id=\"ulfi0n\" data-start=\"839\" data-end=\"904\"><em data-start=\"841\" data-end=\"851\">En rapport :<\/em> &#8220;<a href=\"https:\/\/sparkforautism.org\/discover_article\/autism-questions-answered\/\" target=\"_blank\" rel=\"noopener\">Vos questions sur l&#8217;autisme, r\u00e9pondues<\/a>&#8221; (de <span class=\"notranslate\">SPARK<\/span>)<\/li>\n<\/ul>\n<h2 data-section-id=\"1193qvl\" data-start=\"911\" data-end=\"956\">D\u00e9marrer avec <span class=\"notranslate\">Simons Searchlight<\/span><\/h2>\n<p data-start=\"957\" data-end=\"1017\">Tout ce que vous devez savoir sur la participation \u00e0 la recherche.<\/p>\n<ul data-start=\"1019\" data-end=\"1187\">\n<li data-section-id=\"16y7h2w\" data-start=\"1019\" data-end=\"1112\"><a href=\"https:\/\/www.simonssearchlight.org\/fr\/questions-frequemment-posees\/\" target=\"_blank\" rel=\"noopener\"><strong>Questions fr\u00e9quemment pos\u00e9es<\/strong><\/a> &#8211; \u00c0 propos de l&#8217;\u00e9tude, de la participation et de l&#8217;enregistrement du compte<\/li>\n<li data-section-id=\"1p7pupb\" data-start=\"1113\" data-end=\"1187\"><strong><a href=\"https:\/\/www.simonssearchlight.org\/fr\/ressources\/partage-des-donnees\/\" target=\"_blank\" rel=\"noopener\">Partage des donn\u00e9es<\/a><\/strong> &#8211; Comment vos informations sont partag\u00e9es et utilis\u00e9es dans la recherche<\/li>\n<\/ul>\n<h2 data-section-id=\"2sdynr\" data-start=\"1194\" data-end=\"1231\">Guides familiaux et navigation dans la vie<\/h2>\n<p data-start=\"1232\" data-end=\"1314\">Des <span class=\"notranslate\">ressources<\/span> pratiques et de soutien pour naviguer dans la vie avec une maladie g\u00e9n\u00e9tique rare.<\/p>\n<ul data-start=\"1316\" data-end=\"1636\">\n<li data-section-id=\"1c06r1q\" data-start=\"1316\" data-end=\"1386\"><strong><a href=\"https:\/\/www.simonssearchlight.org\/fr\/2023\/09\/11\/guide-a-lusage-des-familles-naviguer-dans-la-vie-apres-un-diagnostic-genetique-rare\/\" target=\"_blank\" rel=\"noopener\">Guide \u00e0 l&#8217;usage des familles : Naviguer dans la vie apr\u00e8s un diagnostic g\u00e9n\u00e9tique rare<\/a><\/strong><\/li>\n<li data-section-id=\"1uof6qv\" data-start=\"1387\" data-end=\"1455\"><strong><a href=\"https:\/\/www.simonssearchlight.org\/fr\/guide-a-lusage-des-familles-comprendre-les-diagnostics-genetiques-et-cliniques\/\" target=\"_blank\" rel=\"noopener\">Guide \u00e0 l&#8217;usage des familles : Comprendre les diagnostics g\u00e9n\u00e9tiques et cliniques<\/a><\/strong><\/li>\n<li data-section-id=\"irafa5\" data-start=\"1456\" data-end=\"1544\"><strong><a href=\"https:\/\/www.simonssearchlight.org\/fr\/naviguer-dans-la-menstruation-soutien-aux-soignants-de-personnes-handicapees\/\" target=\"_blank\" rel=\"noopener\">Naviguer dans la menstruation : Soutien aux soignants de personnes handicap\u00e9es<\/a><\/strong><\/li>\n<li data-section-id=\"6nbt0x\" data-start=\"1545\" data-end=\"1636\"><a href=\"https:\/\/www.simonssearchlight.org\/fr\/ressources\/tutelle\/\" target=\"_blank\" rel=\"noopener\"><strong>Ressources sur les tutelles<\/strong><\/a> &#8211; Soutenir la poursuite de la participation \u00e0 la recherche \u00e0 l&#8217;\u00e2ge adulte<\/li>\n<\/ul>\n<h2 data-section-id=\"1cw3tb9\" data-start=\"1643\" data-end=\"1678\"><span class=\"notranslate\">Ressources<\/span> communautaires et de soutien<\/h2>\n<p data-start=\"1679\" data-end=\"1751\">Entrez en contact avec des organisations de confiance, des outils et des r\u00e9seaux de soutien plus larges.<\/p>\n<ul data-start=\"1753\" data-end=\"2282\">\n<li data-section-id=\"v9co9j\" data-start=\"1753\" data-end=\"1844\"><strong><a href=\"https:\/\/www.librarey.com\/\" target=\"_blank\" rel=\"noopener\">Librarey<\/a><\/strong> &#8211; Une plateforme de recherche qui relie les familles et les chercheurs aux <span class=\"notranslate\">ressources<\/span>.<\/li>\n<li data-section-id=\"19sun1z\" data-start=\"1845\" data-end=\"1984\"><a href=\"https:\/\/www.rareepilepsynetwork.org\/\" target=\"_blank\" rel=\"noopener\"><strong data-start=\"1847\" data-end=\"1894\"><span class=\"hover:entity-accent entity-underline inline cursor-pointer align-baseline\"><span class=\"whitespace-normal\">R\u00e9seau des \u00e9pilepsies rares<\/span><\/span> (REN)<\/strong><\/a> &#8211; R\u00e9seau de collaboration soutenant les personnes et les familles touch\u00e9es par des \u00e9pilepsies rares.<\/li>\n<li data-section-id=\"w8hn5m\" data-start=\"1985\" data-end=\"2131\"><a href=\"https:\/\/nodcc.org\/\" target=\"_blank\" rel=\"noopener\"><strong data-start=\"1987\" data-end=\"2036\"><span class=\"hover:entity-accent entity-underline inline cursor-pointer align-baseline\"><span class=\"whitespace-normal\">Organisation nationale pour les troubles du corps calleux<\/span><\/span> (NODCC)<\/strong><\/a> &#8211; Assure l&#8217;\u00e9ducation, la d\u00e9fense et la communaut\u00e9 des personnes atteintes de troubles du corps calleux.<\/li>\n<li data-section-id=\"15lblny\" data-start=\"2132\" data-end=\"2282\"><a href=\"https:\/\/courageousparentsnetwork.org\/\" target=\"_blank\" rel=\"noopener\"><strong data-start=\"2134\" data-end=\"2175\"><span class=\"hover:entity-accent entity-underline inline cursor-pointer align-baseline\"><span class=\"whitespace-normal\">R\u00e9seau des parents courageux<\/span><\/span><\/strong><\/a> &#8211; Propose des vid\u00e9os, des parcours guid\u00e9s et des <span class=\"notranslate\">ressources<\/span> pour les familles d&#8217;enfants atteints de maladies graves.<\/li>\n<\/ul>\n<h2 data-section-id=\"1qtmp18\" data-start=\"2289\" data-end=\"2333\">Outils p\u00e9dagogiques et <span class=\"notranslate\">ressources<\/span> d&#8217;apprentissage<\/h2>\n<p data-start=\"2334\" data-end=\"2418\">Explorez les outils con\u00e7us pour soutenir les diff\u00e9rents styles d&#8217;apprentissage et les besoins de d\u00e9veloppement.<\/p>\n<ul data-start=\"2420\" data-end=\"2745\">\n<li data-section-id=\"1f8zn8x\" data-start=\"2420\" data-end=\"2510\"><strong data-start=\"2422\" data-end=\"2460\">Mat\u00e9riel \u00e9ducatif multisensoriel<\/strong> &#8211; <span class=\"notranslate\">Ressources<\/span> qui font appel au toucher, \u00e0 la vue et au son\n<ul data-start=\"2420\" data-end=\"2745\">\n<li data-section-id=\"1f8zn8x\" data-start=\"2420\" data-end=\"2510\"><a href=\"https:\/\/do2learn.com\/\"><strong>Do2Learn<\/strong><\/a>&#8211; Outils de soutien \u00e0 l&#8217;apprentissage et au comportement<\/li>\n<li data-section-id=\"1f8zn8x\" data-start=\"2420\" data-end=\"2510\"><a href=\"https:\/\/ies.ed.gov\/ncee\/wwc\/\"><strong>Institut des sciences de l&#8217;\u00e9ducation<\/strong><\/a>&#8211; <span class=\"notranslate\">Ressources<\/span> sur l&#8217;\u00e9ducation fond\u00e9e sur des donn\u00e9es probantes<\/li>\n<li><strong><a href=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2025\/04\/10101840\/PRISMS_Emotional_Behavioral_Challenges_SMS.pdf\">Strat\u00e9gies pour r\u00e9pondre aux d\u00e9fis \u00e9motionnels et comportementaux<\/a><\/strong><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p data-start=\"2747\" data-end=\"2840\"><em data-start=\"2747\" data-end=\"2840\">Conseil : Les ergoth\u00e9rapeutes peuvent proposer des strat\u00e9gies personnalis\u00e9es d&#8217;apprentissage multisensoriel.<\/em><\/p>\n<h2 data-section-id=\"movvh9\" data-start=\"2847\" data-end=\"2880\">Recherche et voix de la communaut\u00e9<\/h2>\n<p data-start=\"2881\" data-end=\"2943\">\u00c9coutez les chercheurs et les responsables communautaires qui fa\u00e7onnent le domaine.<\/p>\n<ul data-start=\"2945\" data-end=\"3110\">\n<li data-section-id=\"1c9ga1i\" data-start=\"2945\" data-end=\"3029\"><a href=\"https:\/\/www.simonssearchlight.org\/fr\/ressources\/profils-des-chercheurs\/\" target=\"_blank\" rel=\"noopener\"><strong>Profils de chercheurs<\/strong><\/a> &#8211; Les points de vue des scientifiques qui utilisent les donn\u00e9es de <span class=\"notranslate\">Simons Searchlight<\/span><\/li>\n<li data-section-id=\"yq2mlk\" data-start=\"3030\" data-end=\"3110\"><strong><a href=\"https:\/\/www.simonssearchlight.org\/fr\/ressources\/nouvelles-et-mises-a-jour\/?filter_category=leading-the-way\" target=\"_blank\" rel=\"noopener\">Interviews de leaders<\/a><\/strong> &#8211; T\u00e9moignages de leaders de groupes de d\u00e9fense des patients<\/li>\n<\/ul>\n<h2 data-section-id=\"1phvujh\" data-start=\"3117\" data-end=\"3139\">Vid\u00e9os et t\u00e9moignages<\/h2>\n<p data-start=\"3140\" data-end=\"3191\">Apprenez gr\u00e2ce \u00e0 des exp\u00e9riences r\u00e9elles et \u00e0 l&#8217;avis d&#8217;experts.<\/p>\n<ul data-start=\"3193\" data-end=\"3312\">\n<li data-section-id=\"y751wh\" data-start=\"3193\" data-end=\"3312\"><a href=\"https:\/\/www.youtube.com\/@SimonsSearchlight\" target=\"_blank\" rel=\"noopener\"><strong data-start=\"3195\" data-end=\"3227\">Vid\u00e9os \u00e9ducatives (YouTube)<\/strong><\/a> &#8211; Les sujets abord\u00e9s sont la participation \u00e0 la recherche, les histoires de famille et les points forts des chercheurs.<\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>&nbsp; Il s&#8217;agit de votre point de d\u00e9part pour en savoir plus sur les maladies g\u00e9n\u00e9tiques \u00e9tudi\u00e9es par Simons Searchlight. Nous mettons r\u00e9guli\u00e8rement ces pages \u00e0 jour avec de nouvelles recherches et informations pour les familles. Comprendre la g\u00e9n\u00e9tique et les pathologies Construire une base pour mieux comprendre votre diagnostic et les sujets qui s&#8217;y [&hellip;]<\/p>\n","protected":false},"author":18,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","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":""},"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/pages\/37987"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/types\/page"}],"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=37987"}],"version-history":[{"count":12,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/pages\/37987\/revisions"}],"predecessor-version":[{"id":78008,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/pages\/37987\/revisions\/78008"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/media?parent=37987"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}