{"id":13393,"date":"2022-09-26T15:11:38","date_gmt":"2022-09-26T19:11:38","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?p=13393"},"modified":"2023-10-05T11:39:48","modified_gmt":"2023-10-05T15:39:48","slug":"simons-searchlight-attended-the-global-genes-conference","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/2022\/09\/26\/simons-searchlight-attended-the-global-genes-conference\/","title":{"rendered":"Simons Searchlight Attended the Global Genes Conference"},"content":{"rendered":"<p><span class=\"notranslate\">Simons Searchlight<\/span> attended the 2022 RARE Patient Advocacy Summit organized by Global Genes in San Diego. The event celebrates the stories of the rare disease community. From researchers, caretakers, and advocates to industry experts, it was a meaningful experience for <span class=\"notranslate\">Simons Searchlight<\/span> to connect with the greater rare disease community.<\/p>\n<p>Amanda Tufano and Jane Hong presented a poster on \u201c<strong>Addressing Social Determinants of Health in the Rare Genetic Community<\/strong>\u201d that looked into the health care cost, healthcare discrimination, and sense of community from survey responders within the <span class=\"notranslate\">Simons Searchlight<\/span> cohort. Right alongside the conference\u2019s theme that every single rare disease story is important, the poster also sought to shine a light on the voices within our community.<\/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-13393 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\/2022\/09\/26\/simons-searchlight-attended-the-global-genes-conference\/image_50416897\/'><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=\"Jane Hong standing in front of her poster\" 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\/2022\/09\/26\/simons-searchlight-attended-the-global-genes-conference\/addressing-social-determinants-of-health-in-the-rare-genetic-community\/'><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=\"Addressing Social Determinants of Health in the Rare Genetic Community\" 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>The conference celebrates the stories of the rare disease community.<\/p>\n","protected":false},"author":18,"featured_media":11986,"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":[26,9],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/13393"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/users\/18"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=13393"}],"version-history":[{"count":9,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/13393\/revisions"}],"predecessor-version":[{"id":13404,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/13393\/revisions\/13404"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media\/11986"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=13393"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/categories?post=13393"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/tags?post=13393"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}