{"id":39729,"date":"2022-09-26T15:11:38","date_gmt":"2022-09-26T19:11:38","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2022\/09\/26\/simons-searchlight-a-participe-a-la-conference-global-genes\/"},"modified":"2024-01-29T10:01:34","modified_gmt":"2024-01-29T15:01:34","slug":"simons-searchlight-a-participe-a-la-conference-global-genes","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/fr\/2022\/09\/26\/simons-searchlight-a-participe-a-la-conference-global-genes\/","title":{"rendered":"Simons Searchlight a particip\u00e9 \u00e0 la conf\u00e9rence Global Genes"},"content":{"rendered":"<p><span class=\"notranslate\">Simons Searchlight<\/span> a particip\u00e9 au 2022 RARE Patient Advocacy Summit organis\u00e9 par Global Genes \u00e0 San Diego. Cet \u00e9v\u00e9nement c\u00e9l\u00e8bre les histoires de la communaut\u00e9 des maladies rares. Qu&#8217;il s&#8217;agisse de chercheurs, de soignants, de d\u00e9fenseurs ou d&#8217;experts de l&#8217;industrie, ce fut pour <span class=\"notranslate\">Simons Searchlight<\/span> une exp\u00e9rience enrichissante qui lui a permis d&#8217;entrer en contact avec l&#8217;ensemble de la communaut\u00e9 des maladies rares.<\/p>\n<p>Amanda Tufano et Jane Hong ont pr\u00e9sent\u00e9 un poster intitul\u00e9 &#8220;<strong>Addressing Social Determinants of Health in the Rare Genetic Community<\/strong>&#8221; (<strong>Aborder les d\u00e9terminants sociaux de la sant\u00e9 dans la communaut\u00e9 des g\u00e8nes rares<\/strong>), qui examine les co\u00fbts des soins de sant\u00e9, la discrimination en mati\u00e8re de soins de sant\u00e9 et le sentiment d&#8217;appartenance \u00e0 la communaut\u00e9 des personnes ayant r\u00e9pondu \u00e0 l&#8217;enqu\u00eate au sein de la cohorte <span class=\"notranslate\">Simons Searchlight<\/span>. Parall\u00e8lement au th\u00e8me de la conf\u00e9rence, selon lequel chaque histoire de maladie rare est importante, l&#8217;affiche visait \u00e9galement \u00e0 mettre en lumi\u00e8re les voix au sein de notre communaut\u00e9.<\/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-39729 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\/fr\/2022\/09\/26\/simons-searchlight-a-participe-a-la-conference-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\/fr\/2022\/09\/26\/simons-searchlight-a-participe-a-la-conference-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, 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\/>\n\t\t<\/div>\n\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>La conf\u00e9rence c\u00e9l\u00e8bre les histoires de la communaut\u00e9 des maladies rares.<\/p>\n","protected":false},"author":18,"featured_media":39746,"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":[188,195],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/39729"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"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=39729"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/39729\/revisions"}],"predecessor-version":[{"id":39749,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/39729\/revisions\/39749"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/media\/39746"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/media?parent=39729"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/categories?post=39729"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/tags?post=39729"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}