{"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\/tr\/emily-speaks-and-is-honored-at-global-genes-rare-patient-advocacy-summit\/","title":{"rendered":"Emily Global Genes RARE Hasta Savunuculu\u011fu Zirvesinde Konu\u015ftu ve Onurland\u0131r\u0131ld\u0131"},"content":{"rendered":"

Canl\u0131 yay\u0131n\u0131 23 Eyl\u00fcl Cuma g\u00fcn\u00fc saat 16:00'da EST \u00fczerinden izleyin Nadir \u00dcniversite'nin platformu<\/a>.<\/em><\/p>\n

Bug\u00fcn, Emily'nin be\u015finci nadir hastal\u0131klar kongresinde di\u011fer sayg\u0131n nadir hastal\u0131k payda\u015flar\u0131 aras\u0131nda olmay\u0131 tercih edece\u011fi ba\u015fka bir yer yok. Global Genes RARE Hasta Savunuculuk Zirvesi<\/a><\/span>\u00a0Huntington Beach, Kaliforniya'da. Emily sadece a\u00e7\u0131l\u0131\u015f konu\u015fmac\u0131s\u0131 olarak de\u011fil ayn\u0131 zamanda onur konu\u011fu olarak da kat\u0131l\u0131yor!<\/span><\/p>\n

\"img_8347\"Bu zirve ger\u00e7ekten ezber bozan bir etkinlik. Hastalar, hasta bak\u0131c\u0131lar ve savunucular, eyleme ge\u00e7irilebilir sonraki ad\u0131mlar\u0131 atmak, y\u0131kmaya, hayal etmeye, inanmaya ve ke\u015ffetmeye devam etmek i\u00e7in ihtiya\u00e7 duyduklar\u0131 ara\u00e7lar\u0131 \u00f6\u011frenmek \u00fczere d\u00fcnyan\u0131n d\u00f6rt bir yan\u0131ndan bir araya geliyor. Emily gibi, Global Genes konferans\u0131na kat\u0131lan y\u00fczlerce insan, hayatlar\u0131n\u0131 de\u011fi\u015ftirmek i\u00e7in ihtiya\u00e7 duyduklar\u0131 sonu\u00e7lar\u0131 elde edecek hassas t\u0131p giri\u015fimleri \u00fczerinde yorulmadan \u00e7al\u0131\u015f\u0131yor. K\u00fcresel Genler<\/a>Bu Zirve'nin sponsoru, hasta savunuculu\u011funa odaklanm\u0131\u015ft\u0131r. Misyonlar\u0131, fark\u0131ndal\u0131k yaratarak, savunucular\u0131 e\u011fiterek ve ba\u011flant\u0131 kurarak nadir hastal\u0131klar\u0131n zorluklar\u0131n\u0131 ortadan kald\u0131rmak ve b\u00f6ylece hastal\u0131klar\u0131 i\u00e7in aktivist olabilmelerini sa\u011flamakt\u0131r. <\/span><\/p>\n

Cumartesi gecesi d\u00fczenlenecek gala etkinli\u011finde Global Genes, Emily'yi RARE Umut \u015eampiyonu<\/a> Savunuculuk kategorisinde. D\u00fcnyan\u0131n d\u00f6rt bir yan\u0131ndan 350'den fazla ki\u015fi ve kurulu\u015f bu \u00f6d\u00fcl i\u00e7in aday g\u00f6sterildi ve bu prestijli \u00f6d\u00fcl\u00fc almak \u00fczere se\u00e7ilen sadece ON \u0130K\u0130 ola\u011fan\u00fcst\u00fc ki\u015fiden biri olma onuru inan\u0131lmaz derecede al\u00e7akg\u00f6n\u00fcll\u00fc ve heyecan verici!<\/span><\/p>\n

Buna ek olarak Emily, konferans s\u0131ras\u0131nda NGLY1 Vakf\u0131 Ba\u015fkan\u0131 Matt Might ve Levine Media Group M\u00fcd\u00fcr\u00fc Daniel Levine ile birlikte bir a\u00e7\u0131l\u0131\u015f konu\u015fmas\u0131 yapacak. Emily ve Matt, hassas t\u0131p ve bunun nadir hastal\u0131k toplulu\u011fu i\u00e7in \u00f6nemi - hastalar\u0131n kendi te\u015fhisleriyle en iyi nas\u0131l etkile\u015fime girebilecekleri ve ger\u00e7ek de\u011fi\u015fimi nas\u0131l etkileyebilecekleri hakk\u0131nda konu\u015facaklar.<\/span><\/p>\n

\"eegg\"Rakamlar \u015fa\u015f\u0131rt\u0131c\u0131, ancak \u00e7ok az\u0131m\u0131z nadir hastal\u0131klar\u0131n ne kadar yayg\u0131n olabilece\u011finin fark\u0131nday\u0131z. Onlara \"nadir\" diyoruz, ancak etraf\u0131m\u0131za bakt\u0131\u011f\u0131m\u0131zda bu hastal\u0131klardan etkilenen birini tan\u0131yor olmam\u0131z muhtemeldir - her 10 Amerikal\u0131dan 1'i, Amerika Birle\u015fik Devletleri'nde 30 milyon ki\u015fi ve d\u00fcnya \u00e7ap\u0131nda \u015fa\u015f\u0131rt\u0131c\u0131 bir \u015fekilde 350 milyon ki\u015fi.\u00a0<\/span><\/p>\n

Global Genes, en iyisini temsil eder <\/span>Nadir hastal\u0131klar konusunda fikir \u00f6nderleri ve bu y\u0131l Emily ve \u00e7evresine umut ve cesaret veriyorlar. Bu etkinli\u011fin bir par\u00e7as\u0131 olmak ne b\u00fcy\u00fck bir onur!<\/span><\/p>\n

Emily'nin Kaliforniya gezisini Twitter (@EmilyKG1), Instagram (@EmilysEntourage) ve Snapchat (EmilysEntourage) \u00fczerinden takip edebilirsiniz. Canl\u0131 yay\u0131n yapabilirsiniz<\/span> Emily'nin paneli 23 Eyl\u00fcl Cuma g\u00fcn\u00fc saat 16:00'da EST \u00fczerinden Nadir \u00dcniversite'nin platformu<\/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\/tr\/wp-json\/wp\/v2\/posts\/5081","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/users\/1281"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=5081"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/5081\/revisions"}],"predecessor-version":[{"id":20483,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/5081\/revisions\/20483"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/5094"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=5081"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=5081"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=5081"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}