{"id":45034,"date":"2022-09-26T15:11:38","date_gmt":"2022-09-26T19:11:38","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2022\/09\/26\/a-simons-searchlight-participou-da-conferencia-global-genes\/"},"modified":"2024-03-21T15:20:17","modified_gmt":"2024-03-21T19:20:17","slug":"a-simons-searchlight-participou-da-conferencia-global-genes","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/pt-br\/2022\/09\/26\/a-simons-searchlight-participou-da-conferencia-global-genes\/","title":{"rendered":"A Simons Searchlight participou da Confer\u00eancia Global Genes"},"content":{"rendered":"<p>A <span class=\"notranslate\">Simons Searchlight<\/span> participou da C\u00fapula de Defesa do Paciente RARE 2022, organizada pela Global Genes em San Diego. O evento celebra as hist\u00f3rias da comunidade de doen\u00e7as raras. De pesquisadores, cuidadores e defensores a especialistas do setor, foi uma experi\u00eancia significativa para a <span class=\"notranslate\">Simons Searchlight<\/span> se conectar com a comunidade mais ampla de doen\u00e7as raras.<\/p>\n<p>Amanda Tufano e Jane Hong apresentaram um p\u00f4ster sobre &#8220;<strong>Addressing Social Determinants of Health in the Rare Genetic Community<\/strong>&#8221; (<strong>Abordagem dos determinantes sociais da sa\u00fade na comunidade de gen\u00e9tica rara<\/strong>), que analisou o custo dos cuidados com a sa\u00fade, a discrimina\u00e7\u00e3o em rela\u00e7\u00e3o aos cuidados com a sa\u00fade e o senso de comunidade dos respondentes da pesquisa dentro do grupo <span class=\"notranslate\">Simons Searchlight<\/span>. Juntamente com o tema da confer\u00eancia de que todas as hist\u00f3rias de doen\u00e7as raras s\u00e3o importantes, o p\u00f4ster tamb\u00e9m procurou destacar as vozes da nossa comunidade.<\/p>\n\n\t\t<style type=\"text\/css\">\n\t\t\t#gallery-1 {\n\t\t\t\tmargin: auto;\n\t\t\t}\n\t\t\t#gallery-1 .gallery-item {\n\t\t\t\tfloat: left;\n\t\t\t\tmargin-top: 10px;\n\t\t\t\ttext-align: center;\n\t\t\t\twidth: 50%;\n\t\t\t}\n\t\t\t#gallery-1 img {\n\t\t\t\tborder: 2px solid #cfcfcf;\n\t\t\t}\n\t\t\t#gallery-1 .gallery-caption {\n\t\t\t\tmargin-left: 0;\n\t\t\t}\n\t\t\t\/* see gallery_shortcode() in wp-includes\/media.php *\/\n\t\t<\/style>\n\t\t<div id='gallery-1' class='gallery galleryid-45034 gallery-columns-2 gallery-size-full'><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/www.simonssearchlight.org\/pt-br\/2022\/09\/26\/a-simons-searchlight-participou-da-conferencia-global-genes\/image_50416897-2\/'><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1920\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110633\/image_50416897-scaled.jpg\" class=\"attachment-full size-full\" alt=\"\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110633\/image_50416897-scaled.jpg 2560w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110633\/image_50416897-300x225.jpg 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110633\/image_50416897-1024x768.jpg 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110633\/image_50416897-768x576.jpg 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110633\/image_50416897-1536x1152.jpg 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110633\/image_50416897-2048x1536.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/a>\n\t\t\t<\/dt><\/dl><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/www.simonssearchlight.org\/pt-br\/2022\/09\/26\/a-simons-searchlight-participou-da-conferencia-global-genes\/addressing-social-determinants-of-health-in-the-rare-genetic-community-2\/'><img loading=\"lazy\" decoding=\"async\" width=\"4608\" height=\"3456\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110626\/Addressing-Social-Determinants-of-Health-in-the-Rare-Genetic-Community.png\" class=\"attachment-full size-full\" alt=\"\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110626\/Addressing-Social-Determinants-of-Health-in-the-Rare-Genetic-Community.png 4608w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110626\/Addressing-Social-Determinants-of-Health-in-the-Rare-Genetic-Community-300x225.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110626\/Addressing-Social-Determinants-of-Health-in-the-Rare-Genetic-Community-1024x768.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110626\/Addressing-Social-Determinants-of-Health-in-the-Rare-Genetic-Community-768x576.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110626\/Addressing-Social-Determinants-of-Health-in-the-Rare-Genetic-Community-1536x1152.png 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110626\/Addressing-Social-Determinants-of-Health-in-the-Rare-Genetic-Community-2048x1536.png 2048w\" sizes=\"(max-width: 4608px) 100vw, 4608px\" \/><\/a>\n\t\t\t<\/dt><\/dl><br style=\"clear: both\" \/>\n\t\t<\/div>\n\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>A confer\u00eancia celebra as hist\u00f3rias da comunidade de doen\u00e7as raras.<\/p>\n","protected":false},"author":18,"featured_media":45059,"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":[300,293],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/posts\/45034"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/types\/post"}],"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=45034"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/posts\/45034\/revisions"}],"predecessor-version":[{"id":45063,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/posts\/45034\/revisions\/45063"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/media\/45059"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/media?parent=45034"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/categories?post=45034"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/tags?post=45034"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}