{"id":42564,"date":"2022-09-26T15:11:38","date_gmt":"2022-09-26T19:11:38","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2022\/09\/26\/simons-zoeklicht-bezocht-de-global-genes-conferentie\/"},"modified":"2024-02-15T14:17:45","modified_gmt":"2024-02-15T19:17:45","slug":"simons-zoeklicht-bezocht-de-global-genes-conferentie","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/nl\/2022\/09\/26\/simons-zoeklicht-bezocht-de-global-genes-conferentie\/","title":{"rendered":"Simons Zoeklicht bezocht de Global Genes Conferentie"},"content":{"rendered":"<p><span class=\"notranslate\">Simons Searchlight<\/span> nam deel aan de 2022 RARE Patient Advocacy Summit, georganiseerd door Global Genes in San Diego. Het evenement viert de verhalen van de gemeenschap van zeldzame ziekten. Van onderzoekers, verzorgers en pleitbezorgers tot experts uit de industrie, het was een betekenisvolle ervaring voor <span class=\"notranslate\">Simons Searchlight<\/span> om in contact te komen met de grotere gemeenschap van zeldzame ziekten.<\/p>\n<p>Amanda Tufano en Jane Hong presenteerden een poster over &#8220;<strong>Addressing Social Determinants of Health in the Rare Genetic Community<\/strong>&#8221; waarin werd gekeken naar de kosten van de gezondheidszorg, discriminatie in de gezondheidszorg en het gemeenschapsgevoel van de respondenten van het <span class=\"notranslate\">Simons Searchlight<\/span>-cohort. Naast het thema van de conferentie dat elk verhaal over zeldzame ziekten belangrijk is, wilde de poster ook het licht laten schijnen op de stemmen binnen onze gemeenschap.<\/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-42564 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\/nl\/2022\/09\/26\/simons-zoeklicht-bezocht-de-global-genes-conferentie\/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=\"\" 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\/nl\/2022\/09\/26\/simons-zoeklicht-bezocht-de-global-genes-conferentie\/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=\"\" 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>De conferentie viert de verhalen van de gemeenschap van zeldzame ziekten.<\/p>\n","protected":false},"author":18,"featured_media":42591,"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":[273,279],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/posts\/42564"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/users\/18"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/comments?post=42564"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/posts\/42564\/revisions"}],"predecessor-version":[{"id":42598,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/posts\/42564\/revisions\/42598"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/media\/42591"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/media?parent=42564"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/categories?post=42564"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/tags?post=42564"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}