{"id":18368,"date":"2023-02-26T01:03:26","date_gmt":"2023-02-26T06:03:26","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=18368"},"modified":"2023-04-26T11:16:35","modified_gmt":"2023-04-26T15:16:35","slug":"ee-launches-extraordinrare-campaign-for-rare-disease-week","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/ee-launches-extraordinrare-campaign-for-rare-disease-week\/","title":{"rendered":"EE Nadir Hastal\u0131klar Haftas\u0131 i\u00e7in \"ExtraordinRARE\" Kampanyas\u0131n\u0131 Ba\u015flatt\u0131"},"content":{"rendered":"

Nadir hastal\u0131klar konusunda kritik fark\u0131ndal\u0131k yaratmak amac\u0131yla her y\u0131l d\u00fcnya \u00e7ap\u0131nda d\u00fczenlenen bir kampanya olan Nadir Hastal\u0131klar Haftas\u0131, 28 \u015eubat Nadir Hastal\u0131klar G\u00fcn\u00fc'n\u00fc kutlamak \u00fczere bug\u00fcn ba\u015fl\u0131yor. Bu hafta, kistik fibrozis (KF) ve KF'nin nadir mutasyonlar\u0131 da dahil olmak \u00fczere nadir hastal\u0131klardan etkilenen t\u00fcm bireylerin ve ailelerin ya\u015famlar\u0131n\u0131n iyile\u015ftirilmesi ve kritik fark\u0131ndal\u0131\u011f\u0131n art\u0131r\u0131lmas\u0131 i\u00e7in toplumun toplu bir destek g\u00f6sterisinde bir araya gelme zaman\u0131d\u0131r. <\/span><\/p>\n

Nadir ve anlams\u0131z mutasyonlara sahip KF toplulu\u011funun son 10%'sine odaklanm\u0131\u015f bir kurulu\u015f olarak, nadir hastal\u0131k toplulu\u011fundaki \u00fcyeli\u011fimizi \u00f6zellikle kalbimize yak\u0131n tutuyoruz. Bu nedenle Emily's Entourage (EE) olarak \"ExtraordinRARE\" kampanyam\u0131zla Nadir Hastal\u0131klar Haftas\u0131'na kat\u0131lmaktan ve destek vermekten gurur duyuyoruz!<\/span><\/p>\n

\"\"<\/p>\n

Nadir G\u00f6r\u00fclen Hastal\u0131k Nedir?<\/span><\/h2>\n

Amerika Birle\u015fik Devletleri'nde 200.000'den az ki\u015fiyi etkileyen herhangi bir hastal\u0131k nadir olarak kabul edilir. 40.000 Amerikal\u0131y\u0131 ve d\u00fcnya \u00e7ap\u0131nda 105.000 ki\u015fiyi etkileyen KF, nadir g\u00f6r\u00fclen bir hastal\u0131kt\u0131r. <\/span>Bu hastal\u0131klar bireysel olarak \"nadir\" olsa da, toplu olarak bundan \u00e7ok uzakt\u0131rlar. Yakla\u015f\u0131k 7.000 nadir hastal\u0131k vard\u0131r ve 25 ila 30 milyon - ya da kabaca her on Amerikal\u0131dan birini - etkilemektedir. \u0130ronik olan ger\u00e7ek ise nadir hastal\u0131klar\u0131n asl\u0131nda olduk\u00e7a yayg\u0131n olmas\u0131d\u0131r.<\/p>\n

\"\"<\/p>\n

Nadir hastal\u0131klar\u0131n yayg\u0131nl\u0131\u011f\u0131na ra\u011fmen, National Organization for Rare Disorders'a (NORD) g\u00f6re nadir hastal\u0131klar\u0131n yakla\u015f\u0131k 90%'si i\u00e7in FDA onayl\u0131 tedavi bulunmamaktad\u0131r. KF kendi ba\u015f\u0131na nadir bir hastal\u0131kt\u0131r ve KF toplulu\u011funun son 10%'sinde mevcut mutasyon hedefli tedavilerden yararlanamayanlar \u00f6zellikle nadirdir. <\/span><\/p>\n

Kurucu ortak Emily Kramer-Golinkoff, \"Nadir hastal\u0131klar toplulu\u011fu b\u00fcy\u00fck \u00f6l\u00e7\u00fcde yetersiz hizmet alan bir pop\u00fclasyondur ve bu \u00f6zellikle hayat kurtaran t\u0131bbi geli\u015fmelerin gerisinde kalan KF toplulu\u011funun son 10%'si i\u00e7in ge\u00e7erlidir\" diyor. \"Emily's Entourage'da hi\u00e7bir hastal\u0131\u011f\u0131n veya mutasyonun \u00f6nemsenmeyecek kadar nadir olmad\u0131\u011f\u0131na inan\u0131yoruz. Umudumuz, Nadir Hastal\u0131klar Haftas\u0131'n\u0131n - ve KF toplulu\u011funu savunmak i\u00e7in yorulmak bilmeden yapt\u0131\u011f\u0131m\u0131z \u00e7al\u0131\u015fmalar\u0131n - dikkat \u00e7ekmesi ve KF toplulu\u011funun son 10%'si ve nadir hastal\u0131klar\u0131 olan t\u00fcm insanlar i\u00e7in kritik ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirmeyi h\u0131zland\u0131rmas\u0131, b\u00f6ylece kimsenin geride kalmamas\u0131d\u0131r.\"<\/span><\/p>\n

Kar\u015f\u0131n\u0131zda \"ExtraordinRARE\"<\/b><\/h2>\n

Nadir Hastal\u0131klar Haftas\u0131 2023 kapsam\u0131nda EE bug\u00fcn, KF'nin nadir mutasyonlar\u0131yla ya\u015fayanlar\u0131 ve daha geni\u015f nadir hastal\u0131k toplulu\u011funu vurgulamak, kar\u015f\u0131la\u015ft\u0131klar\u0131 zorluklar hakk\u0131nda fark\u0131ndal\u0131k yaratmak ve bizi birle\u015ftiren ola\u011fan\u00fcst\u00fc nadir ve \u00f6zel nitelikleri kutlamak i\u00e7in bir hafta s\u00fcrecek \"ExtraordinRARE\" adl\u0131 dijital kampanyay\u0131 ba\u015flat\u0131yor,<\/span><\/p>\n

\n

\u00c7o\u011fu zaman nadir g\u00f6r\u00fclen \u015feyler marjinal, unutulmu\u015f veya \u00f6nemsenmeyecek kadar \u00f6nemsiz olarak yorumlanabilir. Asl\u0131nda, bizi benzersiz, ilgin\u00e7 ve yetenekli k\u0131lan \u015fey ba\u015f tac\u0131m\u0131z olabilir. 'ExtraordinRARE' nadir hastal\u0131klar toplulu\u011funu nadirliklerini kucaklamalar\u0131 ve kutlamalar\u0131 i\u00e7in g\u00fc\u00e7lendirir. '<\/span>ExtraordinRARE' nadir olman\u0131n bir zay\u0131fl\u0131k olmak zorunda olmad\u0131\u011f\u0131n\u0131 g\u00f6stermek i\u00e7in senaryoyu tersine \u00e7eviriyor.<\/span><\/p>\n<\/blockquote>\n

Nadir Hastal\u0131klar Haftas\u0131 boyunca EE'nin \"ExtraordinRARE\" kampanyas\u0131, KF toplumundan g\u00fc\u00e7l\u00fc hikayelere ve nadir hastal\u0131klarla ilgili ger\u00e7eklere yer verecek ve herkesi, \u00f6zellikle de nadir hastal\u0131klardan etkilenenleri, nadir ve ola\u011fan\u00fcst\u00fc niteliklerini benimsemeye te\u015fvik edecektir. <\/span><\/p>\n

\"ExtraordinRARE \"in Bir Par\u00e7as\u0131 Olun!<\/strong><\/h2>\n

T\u00fcm \"ExtraordinRARE\" niteliklerimizi kutlarken bize kat\u0131l\u0131n ve istisnai nadir hastal\u0131k toplulu\u011funu tan\u0131mam\u0131za ve fark\u0131ndal\u0131k yaratmam\u0131za yard\u0131mc\u0131 olun. Sohbete kat\u0131lmak i\u00e7in Facebook veya Instagram'\u0131m\u0131za gidin!<\/span><\/p>\n

Sizi \"ExtraordinRARE\" yapan \u015feyi payla\u015f\u0131n<\/a><\/p>\n

 <\/h2>\n

Nadir Hastal\u0131klar Haftas\u0131 Sponsorlar\u0131m\u0131za Te\u015fekk\u00fcr Ederiz<\/strong><\/h2>\n

\"\"<\/p>\n

 <\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

Nadir hastal\u0131klar konusunda \u00f6nemli bir fark\u0131ndal\u0131k yaratmak amac\u0131yla her y\u0131l d\u00fcnya \u00e7ap\u0131nda d\u00fczenlenen bir kampanya olan Nadir Hastal\u0131klar Haftas\u0131, 28 \u015eubat Nadir Hastal\u0131klar G\u00fcn\u00fc kutlamalar\u0131 \u00e7er\u00e7evesinde bug\u00fcn ba\u015fl\u0131yor. Bu hafta, kritik fark\u0131ndal\u0131\u011f\u0131n art\u0131r\u0131lmas\u0131 ve nadir hastal\u0131klardan etkilenen t\u00fcm bireylerin ve ailelerin ya\u015famlar\u0131n\u0131n iyile\u015ftirilmesi i\u00e7in toplumun toplu bir destek g\u00f6sterisinde bir araya gelme zaman\u0131d\u0131r... <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1361,"featured_media":18443,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"none","_seopress_titles_title":"%%sitetitle%% %%sep%% %%post_title%%","_seopress_titles_desc":"%%post_excerpt%%","_seopress_robots_index":"","_seopress_analysis_target_kw":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-18368","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/CROPPED.jpg","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/18368","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\/1361"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=18368"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/18368\/revisions"}],"predecessor-version":[{"id":18432,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/18368\/revisions\/18432"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/18443"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=18368"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=18368"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=18368"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}