{"id":15336,"date":"2021-02-22T08:09:57","date_gmt":"2021-02-22T13:09:57","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=15336"},"modified":"2021-02-22T13:05:32","modified_gmt":"2021-02-22T18:05:32","slug":"ee-rare-disease-week-2021-rare-is-everywhere","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/ee-rare-disease-week-2021-rare-is-everywhere\/","title":{"rendered":"EE Nadir Hastal\u0131klar Haftas\u0131 2021: \"Nadirlik Her Yerde\""},"content":{"rendered":"

Nadir Hastal\u0131klar Haftas\u0131, 28 \u015eubat Nadir Hastal\u0131klar G\u00fcn\u00fc'n\u00fc kutlamak \u00fczere 22 \u015eubat'ta ba\u015flayan ve nadir hastal\u0131klar konusunda fark\u0131ndal\u0131k yaratmay\u0131 ama\u00e7layan y\u0131ll\u0131k bir kutlamad\u0131r. Toplumun, Kistik Fibrozis (KF) de dahil olmak \u00fczere nadir hastal\u0131klardan etkilenen t\u00fcm bireylerin ve ailelerin ya\u015famlar\u0131n\u0131 iyile\u015ftirmek ve fark\u0131ndal\u0131\u011f\u0131 art\u0131rmak i\u00e7in toplu bir destek g\u00f6sterisinde bir araya gelme zaman\u0131d\u0131r.
\n<\/span><\/p>\n

NADI\u0307R HASTALIK NEDI\u0307R?\u00a0<\/strong><\/span><\/h2>\n

Amerika Birle\u015fik Devletleri'nde 200.000'den az ki\u015fiyi etkileyen herhangi bir hastal\u0131k nadir olarak kabul edilir. Yakla\u015f\u0131k 30.000 Amerikal\u0131y\u0131 ve d\u00fcnya \u00e7ap\u0131nda 70.000 ki\u015fiyi etkileyen KF, en iyi bilinen nadir hastal\u0131klardan biridir. <\/span>Hastal\u0131klar bireysel olarak \"nadir\" olsa da, toplu olarak bundan \u00e7ok uzakt\u0131rlar. Asl\u0131nda, her on Amerikal\u0131dan birini etkileyen yakla\u015f\u0131k 7.000 nadir hastal\u0131k vard\u0131r. \u0130ronik olan ger\u00e7ek ise nadir hastal\u0131klar\u0131n asl\u0131nda olduk\u00e7a yayg\u0131n olmas\u0131d\u0131r. Nadir hastal\u0131klar\u0131n yayg\u0131nl\u0131\u011f\u0131na ra\u011fmen, National Organization for Rare Disorders'a (NORD) g\u00f6re nadir hastal\u0131klar\u0131n 10%'sinden daha az\u0131 i\u00e7in FDA onayl\u0131 tedaviler bulunmaktad\u0131r.<\/span><\/p>\n

KF kendi ba\u015f\u0131na nadir bir hastal\u0131k olarak kabul edilse de, KF pop\u00fclasyonunun yakla\u015f\u0131k 10%'sini etkileyen nonsense mutasyonlar\u0131na sahip olanlar \u00f6zellikle nadirdir. Nadir bir hastal\u0131k i\u00e7indeki nadir bir mutasyon grubuna odakland\u0131\u011f\u0131m\u0131z i\u00e7in, nadir hastal\u0131klar toplulu\u011fundaki \u00fcyeli\u011fimizi \u00f6zellikle kalbimize yak\u0131n tutuyoruz.<\/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 t\u00fcm nadir hastal\u0131klara olan ilgiyi art\u0131rmas\u0131 ve ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirmeyi h\u0131zland\u0131rmas\u0131, b\u00f6ylece kimsenin geride kalmamas\u0131d\u0131r.\"<\/span><\/p>\n

\"\"<\/p>\n

NADIR HER YERDE\u00a0<\/strong><\/span><\/h2>\n

EE, 2021 Nadir Hastal\u0131klar Haftas\u0131 m\u00fcnasebetiyle \"Nadirlik Her Yerde\" temal\u0131 bir haftal\u0131k dijital kampanya ile KF gibi nadir bir hastal\u0131kla ya\u015faman\u0131n ne anlama geldi\u011fini kutlayacak ve gizemini ortadan kald\u0131racak. EE, 22 \u015eubat Pazartesi g\u00fcn\u00fcnden ba\u015flayarak 28 \u015eubat Pazar g\u00fcn\u00fc Nadir Hastal\u0131klar G\u00fcn\u00fc'ne kadar sosyal medyada nadir hastal\u0131klar ve KF ile ilgili ger\u00e7ekleri, bilgileri ve hikayeleri payla\u015facak ve nonsense mutasyonlar\u0131 da dahil olmak \u00fczere KF'nin nadir mutasyonlar\u0131na odaklanacak.<\/span><\/p>\n

\"Nadir Her Yerde\" kampanyas\u0131, nadir kelimesi gibi \"nadir\" kelimesinin tan\u0131d\u0131k kullan\u0131mlar\u0131ndan yararlanacak <\/span>G\u00fc\u00e7,<\/span><\/i>nadir <\/span>vizyon,<\/span><\/i>ve nadir <\/span>f\u0131rsat<\/span><\/i>-<\/span>\"nadir \"in g\u00fczelli\u011fini ve g\u00fcc\u00fcn\u00fc onaylamak ve kutlamak i\u00e7in. Emily'nin arkada\u015f\u0131 Lower Merion Lisesi (PA) mezunu ve NBA y\u0131ld\u0131z\u0131 Kobe Bryant'\u0131n vefat\u0131ndan \u00f6nce EE'nin \"nadirli\u011fini\" kutlayan bir mesaj kaydetti\u011fi bir \u00f6vg\u00fc de yer al\u0131yor. <\/span>zihniyet.\"<\/span><\/i><\/p>\n

NADI\u0307R HASTALIKLAR HAFTASI TAKVI\u0307MI\u0307\u00a0<\/strong><\/span><\/h2>\n

Pazartesi, 22 \u015eubat<\/span>
\nNadir<\/b> Hastal\u0131k:<\/i><\/b>Nadir hastal\u0131klar hakk\u0131nda ger\u00e7ekler ve istatistikler.<\/span><\/p>\n

Sal\u0131, 23 \u015eubat\u00a0<\/span>
\n<\/b>Nadir <\/b>vizyon:<\/i><\/b>Vizyonlar\u0131 ve liderlikleriyle fark yaratan KF \u00f6nc\u00fclerinin spot \u0131\u015f\u0131\u011f\u0131.<\/span><\/p>\n

\u00c7ar\u015famba, 24 \u015eubat
\nNadir <\/b>Zihniyet:<\/i><\/b>GE'nin i\u015fini yapmak i\u00e7in gereken zihniyet ve odaklanmaya \u00f6zel bir bak\u0131\u015f.
\n<\/span>
\n25 \u015eubat Per\u015fembe ve 26 \u015eubat Cuma
\n<\/span>Nadir <\/b>Cesaret:<\/i><\/b>Nadir g\u00f6r\u00fclen KF mutasyonlar\u0131yla ya\u015fayan insanlara ve onlar\u0131n cesaretinden, ruhundan ve ya\u015fam tutkusundan neler \u00f6\u011frenebilece\u011fimize \u0131\u015f\u0131k tutuyor.
\n<\/span>
\nCumartesi, 27 \u015eubat
\n<\/span>Nadir <\/b>G\u00fc\u00e7:<\/i><\/b>Toplulu\u011fun g\u00fcc\u00fcne ve liderlerin, uzmanlar\u0131n ve bireylerin bir araya gelerek ba\u015fard\u0131klar\u0131na dair \u00f6rnekler.\u00a0<\/span>
\n<\/span>
\nPazar, 28 \u015eubat<\/span>
\n<\/span>Nadir <\/b>f\u0131rsat:<\/i><\/b>EE gibi kurulu\u015flar\u0131n desteklenmesi <\/span>ola\u011fan\u00fcst\u00fc bir \u015feyin par\u00e7as\u0131 olmak i\u00e7in bir f\u0131rsat sa\u011flar.\u00a0<\/span><\/p>\n

EE'nin dijital kampanyas\u0131na ek olarak, EE kurucu orta\u011f\u0131 Emily Kramer-Golinkoff 17 \u015eubat'ta Fingerpaint'in Nadir Hastal\u0131klar Paneline kat\u0131larak Nadir Hastal\u0131klar Haftas\u0131n\u0131 erken ba\u015flatt\u0131. Emily, ba\u011flant\u0131 ve nadir hastal\u0131k hakk\u0131nda bir tart\u0131\u015fma i\u00e7in KF uzmanlar\u0131ndan olu\u015fan \u00e7ok payda\u015fl\u0131 bir panele kat\u0131ld\u0131. Etkinlik hakk\u0131nda daha fazlas\u0131n\u0131 g\u00f6r\u00fcn <\/span>Burada<\/span><\/a>.<\/span><\/p>\n

Sizi, nadir hastal\u0131klara olan ba\u011fl\u0131l\u0131\u011f\u0131n\u0131z\u0131 g\u00f6stererek, nadir hastal\u0131klarla ilgili bilgileri ba\u015fkalar\u0131yla payla\u015farak ve nadir hastal\u0131klar toplulu\u011fundan ilham alarak 2021 Nadir Hastal\u0131klar Haftas\u0131'n\u0131 kutlamak \u00fczere bize kat\u0131lmaya davet ediyoruz.
\n<\/span><\/p>\n

EE, sunum sponsorlar\u0131 Vertex Pharmaceuticals, Inc. ve Viatris'in yan\u0131 s\u0131ra Translate Bio'ya EE'nin 2021 Nadir Hastal\u0131klar Haftas\u0131 Kampanyas\u0131 olan \"Rare is Everywhere \"e verdikleri destek i\u00e7in te\u015fekk\u00fcrlerini sunar.<\/span><\/p>\n

NADI\u0307R HASTALIKLAR HAFTASI SUNUM SPONSORLARIMIZA TE\u015eEKK\u00dcR EDERI\u0307Z\u00a0<\/strong><\/span><\/h2>\n

\"\"\u00a0<\/strong><\/span><\/p>\n

D\u0130\u011eER SPONSORLAR<\/strong><\/span><\/h2>\n

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

Nadir Hastal\u0131klar Haftas\u0131, 28 \u015eubat Nadir Hastal\u0131klar G\u00fcn\u00fc'n\u00fc kutlamak \u00fczere 22 \u015eubat'ta ba\u015flayan ve nadir hastal\u0131klar konusunda fark\u0131ndal\u0131k yaratmay\u0131 ama\u00e7layan y\u0131ll\u0131k bir kutlamad\u0131r. Toplumun, fark\u0131ndal\u0131\u011f\u0131 artt\u0131rmak ve t\u00fcm bireylerin ve ailelerin ya\u015famlar\u0131n\u0131 iyile\u015ftirmek i\u00e7in kolektif bir destek g\u00f6sterisinde bir araya gelme zaman\u0131d\u0131r... <\/p>\n

<\/div>\n

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