{"id":712,"date":"2012-06-29T06:54:59","date_gmt":"2012-06-29T13:54:59","guid":{"rendered":"http:\/\/lw.screammedia.net\/?p=712"},"modified":"2023-12-20T04:35:50","modified_gmt":"2023-12-20T09:35:50","slug":"ee-goes-to-cff-teen-advocacy-day-in-washington-d-c","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/ee-goes-to-cff-teen-advocacy-day-in-washington-d-c\/","title":{"rendered":"EE Washington D.C.'deki CFF Gen\u00e7 Savunuculuk G\u00fcn\u00fcne Gidiyor!"},"content":{"rendered":"

Emily'nin k\u0131z karde\u015fi Julia, 28 Haziran Per\u015fembe g\u00fcn\u00fc Kistik Fibrozis Vakf\u0131'n\u0131n Gen\u00e7 Savunuculuk G\u00fcn\u00fc'ne kat\u0131lmak \u00fczere Washington D.C.'ye gitti. Ona DC'deki lobicilik deneyimi hakk\u0131nda sorular sorduk. Julia'n\u0131n yan\u0131tlar\u0131na g\u00f6z at\u0131n.<\/p>\n

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CFF Gen\u00e7 Avukatl\u0131k Program\u0131 nedir?<\/strong>
\nCFF Gen\u00e7 Savunuculuk Program\u0131, karde\u015fleri, ebeveynleri, arkada\u015flar\u0131 veya KF'den etkilenen di\u011fer sevdikleri olan gen\u00e7ler i\u00e7in kongrede Kistik Fibrozis ara\u015ft\u0131rmalar\u0131n\u0131n desteklenmesi i\u00e7in savunuculuk yapma f\u0131rsat\u0131d\u0131r.<\/p>\n

Kistik Fibrozis i\u00e7in savunuculuk neden \u00f6nemlidir?<\/strong>
\nKistik Fibroz nadir g\u00f6r\u00fclen, yetim bir hastal\u0131kt\u0131r, yani insanlar\u0131n sadece k\u00fc\u00e7\u00fck bir y\u00fczdesini etkiler. Sonu\u00e7 olarak, ila\u00e7 \u015firketlerinin KF ara\u015ft\u0131rmalar\u0131n\u0131 finanse etmeleri i\u00e7in daha az te\u015fvik vard\u0131r. Bu da ara\u015ft\u0131rmalar\u0131 finanse etmek i\u00e7in gereken paran\u0131n \u00e7o\u011funun ya KF'li biriyle ba\u011flant\u0131s\u0131 olan bizim gibi insanlar\u0131n tabandan ba\u011f\u0131\u015f toplamas\u0131ndan ya da devletten geldi\u011fi anlam\u0131na geliyor.<\/p>\n

Bu i\u015fe nas\u0131l ve neden dahil oldunuz?\u00a0<\/strong>
\nKF'li birisinin karde\u015fi olarak, k\u0131z karde\u015fimin hayat\u0131n\u0131 m\u00fcmk\u00fcn oldu\u011funca uzun ve tatmin edici k\u0131lmak i\u00e7in elimden gelen her \u015feyi yapman\u0131n benim sorumlulu\u011fum oldu\u011funu hissediyorum. CFF Gen\u00e7 Savunuculuk Program\u0131n\u0131 duydu\u011fumda, bu y\u0131k\u0131c\u0131 hastal\u0131k hakk\u0131nda konu\u015fmak ve ba\u015fkalar\u0131n\u0131n bilgilerini geni\u015fletmek ve kongrede KF ara\u015ft\u0131rmalar\u0131na deste\u011fi art\u0131rmay\u0131 ummak i\u00e7in ola\u011fan\u00fcst\u00fc bir yol oldu\u011funu d\u00fc\u015f\u00fcnd\u00fcm.<\/p>\n

Kongre'de lobi yapmaktaki amac\u0131n\u0131z neydi?<\/strong>
\nCFF'nin bu y\u0131lki Gen\u00e7 Savunuculuk G\u00fcn\u00fc'n\u00fcn \u00fc\u00e7 ana hedefi vard\u0131.<\/p>\n

1) Kongre'ye yasay\u0131 kabul etti\u011fi i\u00e7in te\u015fekk\u00fcr edin. Uzmanl\u0131\u011f\u0131n Geni\u015fletilmesi ve Te\u015fvik Edilmesi (EXPERRT) yasa tasar\u0131s\u0131<\/a>G\u0131da ve \u0130la\u00e7 Dairesi'nin (FDA) nadir hastal\u0131klar (KF gibi) i\u00e7in yeni ila\u00e7lar\u0131 FDA d\u0131\u015f\u0131ndaki uzmanlara ula\u015farak daha kolay incelemesine olanak tan\u0131yor.<\/p>\n

2) Yasan\u0131n tamam\u0131 kalsa da kalmasa da, kongreyi Sa\u011fl\u0131k Reformu Yasas\u0131'n\u0131n uzmanla\u015fm\u0131\u015f, pahal\u0131 KF bak\u0131m\u0131na eri\u015fim sa\u011flayan k\u0131s\u0131mlar\u0131n\u0131 korumaya te\u015fvik edin.<\/p>\n

3) Kongre'yi fon kaynaklar\u0131n\u0131 art\u0131rmaya te\u015fvik etmek FDA<\/a>, the Ulusal Sa\u011fl\u0131k Enstit\u00fcleri<\/a> ve Ulusal Translasyonel Bilimleri Geli\u015ftirme Merkezi<\/a>.<\/p>\n

Bu deneyim i\u00e7in nas\u0131l haz\u0131rland\u0131n\u0131z?<\/strong>
\nDeneyime haz\u0131rlanmak ve bilgimi geni\u015fletmek i\u00e7in bir\u00e7ok makale okudum. Makalelerin bir\u00e7o\u011fu \u015fu adreste bulunabilir Savunuculuk Eylemi b\u00f6l\u00fcm\u00fc<\/a> .. CFF web sitesi<\/a>.<\/p>\n

Kongre'de kimlerle g\u00f6r\u00fc\u015ft\u00fcn\u00fcz?<\/strong>
\nA\u015fa\u011f\u0131daki Pennsylvania Temsilcilerinin personeli ile g\u00f6r\u00fc\u015ft\u00fcm: Temsilci Mike Kelly<\/a>, Temsilci Jason Altmire<\/a>, Temsilci Glenn Thompson<\/a>, Temsilci Jim Gerlach<\/a>, Temsilci Patrick Meehan<\/a>, Temsilci Michael Fitzpatrick<\/a> ve Temsilci Bill Shuster<\/a>.<\/p>\n

Deneyiminiz nas\u0131ld\u0131?<\/strong>
\nGen\u00e7 Savunuculuk G\u00fcn\u00fc asla unutamayaca\u011f\u0131m inan\u0131lmaz bir f\u0131rsatt\u0131. KF konusunda fark\u0131ndal\u0131\u011f\u0131 art\u0131rarak bir fark yaratt\u0131\u011f\u0131ma ger\u00e7ekten inan\u0131yorum. Asl\u0131nda, Temsilci Meehan ile g\u00f6r\u00fc\u015fmemden bir g\u00fcn sonra, KF grubuna kat\u0131lmay\u0131 kabul etti\u011fini belirten bir e-posta ald\u0131m! Bu, savunuculuk \u00e7abalar\u0131m\u0131n yaratt\u0131\u011f\u0131 etkinin ger\u00e7ek ve somut bir g\u00f6stergesiydi.<\/p>\n

Ayr\u0131ca hastal\u0131ktan etkilenen di\u011fer gen\u00e7lerle tan\u0131\u015fmak da harika bir deneyimdi. Umar\u0131m gelecek y\u0131l da kat\u0131l\u0131r\u0131m!!!<\/p>\n

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Harika \u00e7al\u0131\u015fmaya devam et Julia! Seninle gurur duyuyoruz!<\/p>","protected":false},"excerpt":{"rendered":"

Emily’s sister, Julia, traveled to Washington D.C. to take part in the Cystic Fibrosis Foundation’s Teen Advocacy Day on Thursday, June 28. We asked her questions about her experience lobbying in DC. Check out Julia’s responses. ——— What is the CFF Teen Advocacy Program? The CFF Teen Advocacy Program is a chance for teens with… <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":58,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1,6],"tags":[],"class_list":["post-712","post","type-post","status-publish","format-standard","hentry","category-uncategorized","category-emilys-entourage-blog"],"acf":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/712","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\/58"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=712"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/712\/revisions"}],"predecessor-version":[{"id":20443,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/712\/revisions\/20443"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=712"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=712"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=712"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}