{"id":5874,"date":"2017-03-27T00:38:00","date_gmt":"2017-03-27T04:38:00","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=5874"},"modified":"2018-02-14T12:34:07","modified_gmt":"2018-02-14T17:34:07","slug":"personalized-medicine-coalition-congressional-briefing-lobbying","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/personalized-medicine-coalition-congressional-briefing-lobbying\/","title":{"rendered":"Ki\u015fiselle\u015ftirilmi\u015f T\u0131p Koalisyonu Kongre Brifingi ve Lobicilik"},"content":{"rendered":"

Bayan Kramer-Golinkoff Washington'a gidiyor! Ge\u00e7en y\u0131l birka\u00e7 kez ziyaret etti\u011fi Beyaz Saray'a merhaba diyen Emily, ge\u00e7ti\u011fimiz hafta Senat\u00f6rler, \u00e7al\u0131\u015fanlar\u0131 ve di\u011fer politika yap\u0131c\u0131larla Kistik Fibrozis gibi nadir hastal\u0131klara sahip ki\u015filer i\u00e7in ki\u015fiselle\u015ftirilmi\u015f t\u0131p alan\u0131ndaki acil ve kar\u015f\u0131lanmam\u0131\u015f ihtiya\u00e7lar konusunda lobi yapmak \u00fczere Washington'a gitti.<\/span><\/p>\n

\"\"<\/p>\n

Emily g\u00fcne Birle\u015fik Devletler Senatosu Kennedy Caucus Room'da, Ki\u015fiselle\u015ftirilmi\u015f T\u0131p Koalisyonu taraf\u0131ndan d\u00fczenlenen bir panelde ila\u00e7 ve te\u015fhis end\u00fcstrilerinden temsilcilerle birlikte oturarak ba\u015flad\u0131. Panelin konusu, ki\u015fiselle\u015ftirilmi\u015f t\u0131bb\u0131n inovasyonu nas\u0131l te\u015fvik edebilece\u011fi, sa\u011fl\u0131k hizmetlerinin kalitesini nas\u0131l art\u0131rabilece\u011fi ve maliyetleri nas\u0131l d\u00fc\u015f\u00fcrebilece\u011fi ve hangi kamu politikalar\u0131n\u0131n bu alan\u0131n geli\u015fimini h\u0131zland\u0131rabilece\u011fi ya da engelleyebilece\u011fiydi.<\/span><\/p>\n

\"\"<\/p>\n

Massachusetts Senat\u00f6r\u00fc Ed Markey (podyumda ona bir bak\u0131n!) brifingin a\u00e7\u0131l\u0131\u015f konu\u015fmas\u0131n\u0131 yapt\u0131. Panelist olarak Emily, hedefe y\u00f6nelik tedavilerin kendisi gibi hastalar i\u00e7in tek gelecek umudu oldu\u011fu mesaj\u0131n\u0131n alt\u0131n\u0131 \u00e7izdi ve Emily's Entourage'\u0131n Kistik Fibrozis'in nadir g\u00f6r\u00fclen nonsense mutasyonlar\u0131 i\u00e7in hassas t\u0131bb\u0131 ilerletmek \u00fczere yapt\u0131\u011f\u0131 \u00f6nc\u00fc \u00e7al\u0131\u015fmalar\u0131 payla\u015ft\u0131. Ki\u015fiselle\u015ftirilmi\u015f T\u0131p Koalisyonu Ba\u015fkan\u0131 Edward Abrahams konu\u015fmas\u0131n\u0131 canl\u0131 bir soru-cevap ile tamamlad\u0131<\/span><\/p>\n

\u00d6\u011fleden sonra Emily, Senato Sa\u011fl\u0131k, E\u011fitim, \u00c7al\u0131\u015fma ve Emeklilik Komitesi (HELP) \u00e7al\u0131\u015fanlar\u0131yla g\u00f6r\u00fc\u015fmeye devam etti ve burada FDA'ya odaklanarak halk sa\u011fl\u0131\u011f\u0131 politikas\u0131n\u0131 tart\u0131\u015ft\u0131lar. Daha sonra kendi eyaleti olan Pennsylvania'dan Senat\u00f6r Bob Casey ve onun sa\u011fl\u0131k hizmetleri ekibiyle bir araya geldi. <\/span><\/p>\n

\"\"<\/p>\n

Emily, Hill'de ge\u00e7irdi\u011fi zaman\u0131n ki\u015fiselle\u015ftirilmi\u015f t\u0131p vaadine ve \u00f6n\u00fcm\u00fczdeki inan\u0131lmaz f\u0131rsata insani bir y\u00fcz kazand\u0131rd\u0131\u011f\u0131n\u0131 umuyor. Ki\u015fisel d\u00fczeyde, ayd\u0131nlat\u0131c\u0131 bir g\u00fcnd\u00fc - halk sa\u011fl\u0131\u011f\u0131 politikas\u0131nda en \u00fcst d\u00fczey h\u0131zland\u0131r\u0131lm\u0131\u015f kurs - ve EE'nin ki\u015fiselle\u015ftirilmi\u015f t\u0131bb\u0131n eylemdeki nihai uygulamas\u0131 olarak att\u0131\u011f\u0131 inan\u0131lmaz ad\u0131mlar\u0131 payla\u015fmak i\u00e7in paha bi\u00e7ilmez bir f\u0131rsatt\u0131. <\/span><\/p>","protected":false},"excerpt":{"rendered":"

Ms Kramer-Golinkoff goes to Washington! Waving hello to the White House she visited a few times last year, Emily headed to the Hill last week to lobby Senators, their staff and other policymakers on the urgent, unmet needs in personalized medicine for those with rare diseases like Cystic Fibrosis. Emily started her day in the… <\/p>\n

<\/div>\n

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