{"id":5081,"date":"2016-09-22T15:16:39","date_gmt":"2016-09-22T19:16:39","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=5081"},"modified":"2023-12-20T04:53:38","modified_gmt":"2023-12-20T09:53:38","slug":"emily-speaks-and-is-honored-at-global-genes-rare-patient-advocacy-summit","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/sv\/emily-speaks-and-is-honored-at-global-genes-rare-patient-advocacy-summit\/","title":{"rendered":"Emily talade och hedrades vid Global Genes RARE Patient Advocacy Summit"},"content":{"rendered":"

Se livestreamen fredagen den 23 september kl. 16.00 EST via S\u00e4llsynt universitets plattform<\/a>.<\/em><\/p>\n

Idag finns det ingenstans som Emily hellre skulle vilja vara \u00e4n bland andra uppskattade intressenter f\u00f6r s\u00e4llsynta sjukdomar p\u00e5 den femte Global Genes RARE-toppm\u00f6te f\u00f6r patientf\u00f6retr\u00e4dare<\/a><\/span>\u00a0i Huntington Beach, Kalifornien. Emily deltar inte bara som huvudtalare utan ocks\u00e5 som hedersg\u00e4st!<\/span><\/p>\n

\"img_8347\"Detta toppm\u00f6te \u00e4r verkligen en game changer. Patienter, v\u00e5rdgivare och f\u00f6respr\u00e5kare fr\u00e5n hela v\u00e4rlden samlas f\u00f6r att l\u00e4ra sig de verktyg de beh\u00f6ver f\u00f6r att kunna ta n\u00e4sta steg, forts\u00e4tta att f\u00f6r\u00e4ndra, dr\u00f6mma, tro och uppt\u00e4cka. Precis som Emily arbetar de hundratals personer som deltar i Global Genes-konferensen outtr\u00f6ttligt med initiativ inom precisionsmedicin som kommer att ge de resultat de beh\u00f6ver f\u00f6r att f\u00f6r\u00e4ndra sina liv. Globala gener<\/a>som \u00e4r sponsor f\u00f6r detta toppm\u00f6te, har ett starkt fokus p\u00e5 patientf\u00f6retr\u00e4darskap. Deras uppdrag \u00e4r att eliminera utmaningarna med s\u00e4llsynta sjukdomar genom att skapa medvetenhet, utbilda och ansluta f\u00f6respr\u00e5kare s\u00e5 att de kan bli aktivister f\u00f6r sin sjukdom. <\/span><\/p>\n

Vid galan p\u00e5 l\u00f6rdagskv\u00e4llen kommer Global Genes att hedra Emily som en RARE Champion of Hope<\/a> i kategorin Advocacy. Mer \u00e4n 350 personer och organisationer fr\u00e5n hela v\u00e4rlden nominerades till detta pris, och \u00e4ran att vara en av bara TV\u00c5 extraordin\u00e4ra personer som valts ut f\u00f6r att ta emot detta prestigefyllda pris \u00e4r otroligt \u00f6dmjuk och sp\u00e4nnande!<\/span><\/p>\n

Dessutom kommer Emily att h\u00e5lla i en \"keynote fireside chat\" under konferensen tillsammans med Matt Might, ordf\u00f6rande f\u00f6r NGLY1 Foundation, och moderatorn Daniel Levine, chef f\u00f6r Levine Media Group. Emily och Matt kommer att tala om precisionsmedicin och dess betydelse f\u00f6r s\u00e4llsynta sjukdomar - hur patienter b\u00e4st kan engagera sig i sina egna diagnoser och \u00e5stadkomma verklig f\u00f6r\u00e4ndring.<\/span><\/p>\n

\"eegg\"Siffrorna \u00e4r h\u00e4pnadsv\u00e4ckande, men \u00e4nd\u00e5 \u00e4r det f\u00e5 av oss som inser hur vanliga s\u00e4llsynta sjukdomar kan vara. Vi kallar dem \"s\u00e4llsynta\", men om vi ser oss omkring \u00e4r det troligt att vi k\u00e4nner n\u00e5gon som \u00e4r drabbad av dessa sjukdomar - 1 av 10 amerikaner, 30 miljoner m\u00e4nniskor i USA och hisnande 350 miljoner m\u00e4nniskor runt om i v\u00e4rlden.\u00a0<\/span><\/p>\n

Global Genes representerar det b\u00e4sta av <\/span>och i \u00e5r ger de hopp och uppmuntran till Emily och hennes Entourage. Vilken otrolig \u00e4ra att f\u00e5 vara en del av det h\u00e4r evenemanget!<\/span><\/p>\n

Du kan f\u00f6lja Emilys Kalifornienresa genom att f\u00f6lja henne p\u00e5 Twitter (@EmilyKG1), Instagram (@EmilysEntourage) och Snapchat (EmilysEntourage). Du kan livestreama<\/span> Emily's panel fredagen den 23 september kl. 16.00 EST genom S\u00e4llsynt universitets plattform<\/a><\/span>. <\/span><\/p>","protected":false},"excerpt":{"rendered":"

Catch the\u00a0livestream on Friday, September 23rd at 4pm EST through Rare University\u2019s platform. Today, there is nowhere that Emily would rather be than among other esteemed rare disease stakeholders at the fifth Global Genes RARE Patient Advocacy Summit\u00a0in Huntington Beach, California. Emily is attending not only as a keynote speaker but also as an honoree!<\/p>","protected":false},"author":1281,"featured_media":5094,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"","_seopress_robots_breadcrumbs":"","_seopress_robots_freeze_modified_date":"","_seopress_robots_custom_modified_date":"","_seopress_robots_canonical":"","_seopress_social_fb_title":"","_seopress_social_fb_desc":"","_seopress_social_fb_img":"","_seopress_social_fb_img_attachment_id":0,"_seopress_social_fb_img_width":0,"_seopress_social_fb_img_height":0,"_seopress_social_twitter_title":"","_seopress_social_twitter_desc":"","_seopress_social_twitter_img":"","_seopress_social_twitter_img_attachment_id":0,"_seopress_social_twitter_img_width":0,"_seopress_social_twitter_img_height":0,"_seopress_redirections_value":"","_seopress_redirections_enabled":"","_seopress_redirections_enabled_regex":"","_seopress_redirections_logged_status":"","_seopress_redirections_param":"","_seopress_redirections_type":0,"_seopress_analysis_target_kw":"","_seopress_news_disabled":"","_seopress_video_disabled":"","_seopress_video":[],"_seopress_pro_schemas_manual":[],"_seopress_pro_rich_snippets_disable_all":"","_seopress_pro_rich_snippets_disable":[],"_seopress_pro_schemas":[],"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[1,6],"tags":[],"class_list":["post-5081","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","category-emilys-entourage-blog"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EEGG.png","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts\/5081","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/users\/1281"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/comments?post=5081"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts\/5081\/revisions"}],"predecessor-version":[{"id":20483,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts\/5081\/revisions\/20483"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/media\/5094"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/media?parent=5081"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/categories?post=5081"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/tags?post=5081"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}