{"id":43324,"date":"2018-05-03T14:54:20","date_gmt":"2018-05-03T18:54:20","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/recursos\/"},"modified":"2026-03-24T14:00:16","modified_gmt":"2026-03-24T18:00:16","slug":"recursos","status":"publish","type":"page","link":"https:\/\/www.simonssearchlight.org\/pt-br\/recursos\/","title":{"rendered":"Recursos"},"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>Este \u00e9 seu ponto de partida para aprender sobre os dist\u00farbios gen\u00e9ticos que a <span class=\"notranslate\">Simons Searchlight<\/span> estuda. Atualizamos regularmente essas p\u00e1ginas com novas pesquisas e informa\u00e7\u00f5es para as fam\u00edlias.<\/h4>\n<h2 data-section-id=\"1vyrq35\" data-start=\"489\" data-end=\"530\">Entendendo a gen\u00e9tica e as condi\u00e7\u00f5es<\/h2>\n<p data-start=\"531\" data-end=\"605\">Construa uma base para entender melhor seu diagn\u00f3stico e t\u00f3picos relacionados.<\/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\/pt-br\/processo-de-pesquisa\/disturbios-geneticos-que-estudamos\/\" target=\"_blank\" rel=\"noopener\"><strong>O que estudamos<\/strong><\/a> &#8211; Vis\u00e3o geral das variantes gen\u00e9ticas estudadas no <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\/pt-br\/recursos\/perguntas-frequentes-sobre-genetica\/\" target=\"_blank\" rel=\"noopener\"><strong>Perguntas frequentes sobre gen\u00e9tica<\/strong><\/a> &#8211; Saiba mais sobre cromossomos, genes, CNVs e variantes gen\u00e9ticas<\/li>\n<li data-section-id=\"156c13p\" data-start=\"776\" data-end=\"838\"><a href=\"https:\/\/www.simonssearchlight.org\/pt-br\/recursos\/o-que-e-autismo\/\" target=\"_blank\" rel=\"noopener\"><strong>O que \u00e9 autismo?<\/strong><\/a>  &#8211; Vis\u00e3o geral do transtorno do espectro do autismo<\/li>\n<li data-section-id=\"ulfi0n\" data-start=\"839\" data-end=\"904\"><em data-start=\"841\" data-end=\"851\">Relacionado:<\/em> &#8220;<a href=\"https:\/\/sparkforautism.org\/discover_article\/autism-questions-answered\/\" target=\"_blank\" rel=\"noopener\">Suas perguntas sobre autismo, respondidas<\/a>&#8221; (da <span class=\"notranslate\">SPARK<\/span>)<\/li>\n<\/ul>\n<h2 data-section-id=\"1193qvl\" data-start=\"911\" data-end=\"956\">Primeiros passos com o <span class=\"notranslate\">Simons Searchlight<\/span><\/h2>\n<p data-start=\"957\" data-end=\"1017\">Tudo o que voc\u00ea precisa saber sobre a participa\u00e7\u00e3o em pesquisas.<\/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\/pt-br\/perguntas-frequentes\/\" target=\"_blank\" rel=\"noopener\"><strong>Perguntas frequentes<\/strong><\/a> &#8211; Sobre o estudo, a participa\u00e7\u00e3o e o registro da conta<\/li>\n<li data-section-id=\"1p7pupb\" data-start=\"1113\" data-end=\"1187\"><strong><a href=\"https:\/\/www.simonssearchlight.org\/pt-br\/recursos\/compartilhamento-de-dados\/\" target=\"_blank\" rel=\"noopener\">Compartilhamento de dados<\/a><\/strong> &#8211; Como suas informa\u00e7\u00f5es s\u00e3o compartilhadas e usadas em pesquisas<\/li>\n<\/ul>\n<h2 data-section-id=\"2sdynr\" data-start=\"1194\" data-end=\"1231\">Guias familiares e navega\u00e7\u00e3o pela vida<\/h2>\n<p data-start=\"1232\" data-end=\"1314\"><span class=\"notranslate\">Recursos<\/span> pr\u00e1ticos e de apoio para que voc\u00ea possa viver com uma doen\u00e7a gen\u00e9tica rara.<\/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\/pt-br\/2023\/09\/11\/um-guia-para-a-familia-navegando-pela-vida-apos-um-diagnostico-genetico-raro\/\" target=\"_blank\" rel=\"noopener\">Um guia para a fam\u00edlia: Navegando pela vida ap\u00f3s um diagn\u00f3stico gen\u00e9tico raro<\/a><\/strong><\/li>\n<li data-section-id=\"1uof6qv\" data-start=\"1387\" data-end=\"1455\"><strong><a href=\"https:\/\/www.simonssearchlight.org\/pt-br\/um-guia-para-a-familia-entendendo-os-diagnosticos-geneticos-e-clinicos\/\" target=\"_blank\" rel=\"noopener\">Um guia para a fam\u00edlia: Entendendo os diagn\u00f3sticos gen\u00e9ticos e cl\u00ednicos<\/a><\/strong><\/li>\n<li data-section-id=\"irafa5\" data-start=\"1456\" data-end=\"1544\"><strong><a href=\"https:\/\/www.simonssearchlight.org\/pt-br\/navegando-pela-menstruacao-apoio-para-cuidadores-de-pessoas-com-deficiencias\/\" target=\"_blank\" rel=\"noopener\">Navegando pela menstrua\u00e7\u00e3o: Apoio para cuidadores de pessoas com defici\u00eancias<\/a><\/strong><\/li>\n<li data-section-id=\"6nbt0x\" data-start=\"1545\" data-end=\"1636\"><a href=\"https:\/\/www.simonssearchlight.org\/pt-br\/recursos\/tutela\/\" target=\"_blank\" rel=\"noopener\"><strong>Recursos de tutela<\/strong><\/a> &#8211; Apoio \u00e0 participa\u00e7\u00e3o cont\u00ednua na pesquisa at\u00e9 a idade adulta<\/li>\n<\/ul>\n<h2 data-section-id=\"1cw3tb9\" data-start=\"1643\" data-end=\"1678\">Comunidade e <span class=\"notranslate\">recursos<\/span> de suporte<\/h2>\n<p data-start=\"1679\" data-end=\"1751\">Conecte-se com organiza\u00e7\u00f5es confi\u00e1veis, ferramentas e redes de suporte mais amplas.<\/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; Uma plataforma baseada em pesquisa que conecta fam\u00edlias e pesquisadores a <span class=\"notranslate\">recursos<\/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\">Rede de Epilepsia Rara<\/span><\/span> (REN)<\/strong><\/a> &#8211; Rede colaborativa de apoio a indiv\u00edduos e fam\u00edlias afetados por epilepsias raras<\/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\">Organiza\u00e7\u00e3o Nacional para Dist\u00farbios do Corpo Caloso<\/span><\/span> (NODCC)<\/strong><\/a> &#8211; Oferece educa\u00e7\u00e3o, defesa e comunidade para pessoas com dist\u00farbios do corpo caloso<\/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\">Rede de Pais Corajosos<\/span><\/span><\/strong><\/a> &#8211; Oferece v\u00eddeos, caminhos guiados e <span class=\"notranslate\">recursos<\/span> para fam\u00edlias de crian\u00e7as com condi\u00e7\u00f5es m\u00e9dicas graves<\/li>\n<\/ul>\n<h2 data-section-id=\"1qtmp18\" data-start=\"2289\" data-end=\"2333\">Ferramentas educacionais e <span class=\"notranslate\">recursos<\/span> de aprendizagem<\/h2>\n<p data-start=\"2334\" data-end=\"2418\">Explore ferramentas criadas para dar suporte a diferentes estilos de aprendizagem e necessidades de desenvolvimento.<\/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\">Materiais Educacionais Multissensoriais<\/strong> &#8211; <span class=\"notranslate\">Recursos<\/span> que envolvem o tato, a vis\u00e3o e o som\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; Ferramentas de apoio \u00e0 aprendizagem e ao comportamento<\/li>\n<li data-section-id=\"1f8zn8x\" data-start=\"2420\" data-end=\"2510\"><a href=\"https:\/\/ies.ed.gov\/ncee\/wwc\/\"><strong>Instituto de Ci\u00eancias da Educa\u00e7\u00e3o<\/strong><\/a>&#8211; <span class=\"notranslate\">Recursos<\/span> educacionais baseados em evid\u00eancias<\/li>\n<li><strong><a href=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2025\/04\/10101840\/PRISMS_Emotional_Behavioral_Challenges_SMS.pdf\">Estrat\u00e9gias para lidar com desafios emocionais e comportamentais<\/a><\/strong><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p data-start=\"2747\" data-end=\"2840\"><em data-start=\"2747\" data-end=\"2840\">Dica: Os terapeutas ocupacionais podem fornecer estrat\u00e9gias personalizadas para o aprendizado multissensorial.<\/em><\/p>\n<h2 data-section-id=\"movvh9\" data-start=\"2847\" data-end=\"2880\">Pesquisa e vozes da comunidade<\/h2>\n<p data-start=\"2881\" data-end=\"2943\">Ou\u00e7a os pesquisadores e l\u00edderes comunit\u00e1rios que est\u00e3o moldando o campo.<\/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\/pt-br\/recursos\/perfis-de-pesquisadores\/\" target=\"_blank\" rel=\"noopener\"><strong>Perfis de pesquisadores<\/strong><\/a> &#8211; Insights de cientistas que usam os dados do <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\/pt-br\/recursos\/noticias-e-atualizacoes\/?filter_category=leading-the-way\" target=\"_blank\" rel=\"noopener\">Entrevistas com l\u00edderes<\/a><\/strong> &#8211; Hist\u00f3rias de l\u00edderes de grupos de defesa de pacientes<\/li>\n<\/ul>\n<h2 data-section-id=\"1phvujh\" data-start=\"3117\" data-end=\"3139\">V\u00eddeos e hist\u00f3rias<\/h2>\n<p data-start=\"3140\" data-end=\"3191\">Aprenda com experi\u00eancias reais e percep\u00e7\u00f5es de especialistas.<\/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\">V\u00eddeos educacionais (YouTube)<\/strong><\/a> &#8211; Os t\u00f3picos incluem participa\u00e7\u00e3o em pesquisas, hist\u00f3rias de fam\u00edlias e destaques de pesquisadores<\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>&nbsp; Este \u00e9 seu ponto de partida para aprender sobre os dist\u00farbios gen\u00e9ticos que a Simons Searchlight estuda. Atualizamos regularmente essas p\u00e1ginas com novas pesquisas e informa\u00e7\u00f5es para as fam\u00edlias. Entendendo a gen\u00e9tica e as condi\u00e7\u00f5es Construa uma base para entender melhor seu diagn\u00f3stico e t\u00f3picos relacionados. O que estudamos &#8211; Vis\u00e3o geral das variantes [&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\/pt-br\/wp-json\/wp\/v2\/pages\/43324"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/users\/18"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/comments?post=43324"}],"version-history":[{"count":12,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/pages\/43324\/revisions"}],"predecessor-version":[{"id":78006,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/pages\/43324\/revisions\/78006"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/media?parent=43324"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}