{"id":16683,"date":"2022-02-22T08:45:44","date_gmt":"2022-02-22T13:45:44","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=16683"},"modified":"2022-04-04T15:32:33","modified_gmt":"2022-04-04T19:32:33","slug":"dare-to-be-rare-flips-the-script-on-living-with-rare-disease","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/dare-to-be-rare-flips-the-script-on-living-with-rare-disease\/","title":{"rendered":"EE Nadir Hastal\u0131klar Haftas\u0131 i\u00e7in \"Nadir Olmaya Cesaret Edin\" Kampanyas\u0131n\u0131 Ba\u015flatt\u0131"},"content":{"rendered":"

Bug\u00fcn 28 \u015eubat Nadir Hastal\u0131klar G\u00fcn\u00fc \u00f6ncesinde ba\u015flayan Nadir Hastal\u0131klar Haftas\u0131, nadir hastal\u0131klar konusunda \u00f6nemli bir fark\u0131ndal\u0131k yaratmak i\u00e7in d\u00fcnya \u00e7ap\u0131nda y\u00fcr\u00fct\u00fclen bir kampanyad\u0131r. Nadir hastal\u0131klar toplulu\u011funu etkileyen konular hakk\u0131nda fark\u0131ndal\u0131k yaratmak ve kistik fibrozis (KF) de dahil olmak \u00fczere nadir bir hastal\u0131kla ya\u015faman\u0131n ne anlama geldi\u011fini kutlamak i\u00e7in toplumun bir araya gelme zaman\u0131d\u0131r.\u00a0<\/span><\/p>\n

Nadir G\u00f6r\u00fclen Hastal\u0131k Nedir?<\/b>\u00a0<\/span><\/h2>\n

Amerika Birle\u015fik Devletleri'nde nadir hastal\u0131k, 200.000'den az ki\u015fiyi etkileyen herhangi bir hastal\u0131kt\u0131r. Nadir olarak kabul edilen ve yakla\u015f\u0131k her 10 Amerikal\u0131dan birini etkileyen 7.000 hastal\u0131k vard\u0131r. Bu hastal\u0131klar\u0131n her biri ayr\u0131 ayr\u0131 \"nadir\" olsa da, ger\u00e7ek \u015fu ki, toplu olarak nadir hastal\u0131k asl\u0131nda olduk\u00e7a yayg\u0131nd\u0131r. Asl\u0131nda, d\u00fcnya \u00e7ap\u0131nda nadir bir hastal\u0131kla ya\u015fayan 300 milyondan fazla insan var. Bu, k\u00fcresel n\u00fcfusun 5%'si demektir! Nadir hastal\u0131klar\u0131n yayg\u0131nl\u0131\u011f\u0131na ra\u011fmen, nadir hastal\u0131klar\u0131n 90%'sinin FDA onayl\u0131 bir tedavisi yoktur.<\/span><\/p>\n

\"\"<\/p>\n

Nadirlerin Nadidesi<\/b><\/h2>\n

Amerika Birle\u015fik Devletleri'nde 30.000, d\u00fcnya genelinde ise 70.000 ki\u015fiyi etkileyen KF, nadir g\u00f6r\u00fclen bir hastal\u0131k olarak kabul edilmektedir. Son birka\u00e7 y\u0131lda KF toplulu\u011funun 90%'si i\u00e7in hayat kurtar\u0131c\u0131 tedaviler geli\u015ftirilmi\u015ftir, ancak KF'nin nadir sa\u00e7ma mutasyonlar\u0131na sahip olanlar, bu ilerlemelerin hi\u00e7birinden yararlanamayan KF pop\u00fclasyonunun d\u0131\u015f 10%'sinde yer almaktad\u0131r. Bu ki\u015filer nadir bulunanlar aras\u0131nda yer almakta ve hala hayat kurtar\u0131c\u0131lar\u0131n\u0131 soluk solu\u011fa beklemektedirler.\u00a0<\/span><\/p>\n

Emily's Entourage'\u0131n tek odak noktas\u0131 da burada yat\u0131yor: KF nonsense mutasyonlar\u0131na odaklanarak KF pop\u00fclasyonunun son 10%'sinde bulunanlar i\u00e7in hayat kurtar\u0131c\u0131 ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirmeyi h\u0131zland\u0131rmak.<\/span><\/p>\n

EE'nin kurucusu Emily Kramer-Golinkoff, \"EE olarak hi\u00e7bir hastal\u0131\u011f\u0131n veya mutasyonun \u00f6nemsenmeyecek kadar nadir olmad\u0131\u011f\u0131na inan\u0131yoruz\" diyor. \"Umudumuz, Nadir Hastal\u0131klar Haftas\u0131'n\u0131n dikkatleri \u00e7ekmesi ve KF de dahil olmak \u00fczere t\u00fcm nadir hastal\u0131klar i\u00e7in ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirmeyi h\u0131zland\u0131rmas\u0131, b\u00f6ylece kimsenin geride kalmamas\u0131d\u0131r.\"<\/span><\/p>\n

Nadir bir hastal\u0131ktaki nadir bir mutasyon grubuna odakland\u0131\u011f\u0131m\u0131z i\u00e7in, nadir hastal\u0131klar toplulu\u011funa \u00fcyeli\u011fimizi kalbimize yak\u0131n tutuyoruz. Daha geni\u015f bir nadir hastal\u0131k toplulu\u011fuyla bir araya gelmek, bu aray\u0131\u015fta yaln\u0131z olmad\u0131\u011f\u0131m\u0131z\u0131 ve nadirin asl\u0131nda o kadar da nadir olmad\u0131\u011f\u0131n\u0131 hat\u0131rlat\u0131yor.\u00a0<\/span><\/p>\n

\"\"<\/p>\n

Nadir Hastal\u0131klar Haftas\u0131 2022: \"Nadir Olmaya Cesaret Edin\"<\/b><\/h2>\n

EE, 2022 Nadir Hastal\u0131klar Haftas\u0131 m\u00fcnasebetiyle KF gibi nadir g\u00f6r\u00fclen bir hastal\u0131kla ya\u015faman\u0131n ne anlama geldi\u011fini bir hafta s\u00fcrecek \"Nadir Olmaya Cesaret Et\" adl\u0131 dijital kampanya ile kutlayacak.\u00a0<\/span><\/p>\n

Nadir hastal\u0131klar toplulu\u011funda \"nadir\" genellikle marjinalle\u015ftirilmi\u015f, unutulmu\u015f veya \u00f6nemsenmeyecek kadar nadir olarak d\u00fc\u015f\u00fcn\u00fcl\u00fcr. \"Nadir Olmaya Cesaret Et\" kampanyas\u0131, nadir olman\u0131n k\u00f6t\u00fc bir \u015fey olmad\u0131\u011f\u0131n\u0131 g\u00f6stermek i\u00e7in senaryoyu tersine \u00e7eviriyor. Asl\u0131nda bu bizi benzersiz, dinamik, ilgin\u00e7 ve g\u00fc\u00e7l\u00fc k\u0131lan bir \u015fey olabilir.<\/span><\/p>\n

Nadir Hastal\u0131klar Haftas\u0131 boyunca EE, sosyal medyada, EE'nin en \u00f6nemli destek\u00e7ilerinden birinin \u00f6zel mesaj\u0131 da dahil olmak \u00fczere, bu nadirlik niteli\u011fini kutlayan bilgi ve i\u00e7g\u00f6r\u00fcler payla\u015facak. Nadir hastal\u0131k toplulu\u011funun d\u0131\u015f\u0131nda bile \"nadir\" niteliklerin evrenselli\u011fini vurgulayarak, \"nadir\" olan\u0131n asl\u0131nda \u00e7o\u011fu insan\u0131n fark etti\u011finden daha yayg\u0131n olabilece\u011fini ortaya koyaca\u011f\u0131z.<\/span><\/p>\n

Bizimle Nadir Olmaya Cesaret Edin<\/strong><\/h2>\n

Sizi de nadirli\u011finizi bir onur ni\u015fan\u0131 gibi takarak bize kat\u0131lmaya davet ediyoruz. Emily'nin \u00e7izgilerini sergiledi\u011fini g\u00f6rmek ve sizinkileri de sohbete eklemek i\u00e7in Facebook veya Instagram'\u0131m\u0131za gidin!\u00a0<\/span><\/p>\n

\nNadir Olmaya Cesaret Edin >><\/a>\n<\/p>\n

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

\"\"<\/p>\n

Viatris<\/strong><\/h2>\n

Horizon<\/strong><\/h2>","protected":false},"excerpt":{"rendered":"

Bug\u00fcn, 28 \u015eubat Nadir Hastal\u0131klar G\u00fcn\u00fc \u00f6ncesinde ba\u015flayan Nadir Hastal\u0131klar Haftas\u0131, nadir hastal\u0131klar konusunda \u00f6nemli bir fark\u0131ndal\u0131k yaratmay\u0131 ama\u00e7layan d\u00fcnya \u00e7ap\u0131nda bir kampanyad\u0131r. Nadir hastal\u0131klar toplulu\u011funu etkileyen konular hakk\u0131nda fark\u0131ndal\u0131k yaratmak ve nadir hastal\u0131klarla ya\u015faman\u0131n ne anlama geldi\u011fini kutlamak i\u00e7in toplumun bir araya gelme zaman\u0131d\u0131r... <\/p>\n

<\/div>\n

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