{"id":1789,"date":"2025-01-16T13:44:17","date_gmt":"2025-01-16T12:44:17","guid":{"rendered":"http:\/\/klubcf.sk\/?p=1789"},"modified":"2025-01-16T13:53:42","modified_gmt":"2025-01-16T12:53:42","slug":"1789","status":"publish","type":"post","link":"https:\/\/klubcf.sk\/index.php\/2025\/01\/16\/1789\/","title":{"rendered":""},"content":{"rendered":"

DOSTUPNOS\u0164 PR\u00cd\u010cINNEJ LIE\u010cBY NA SLOVENSKU<\/strong> <\/span><\/span><\/h1>\n

V s\u00fa\u010dasnosti je na Slovensku dostupnos\u0165 lie\u010dby cystickej fibr\u00f3zy (CF) v porovnan\u00ed s ostatn\u00fdmi krajinami regi\u00f3nu st\u00e1le obmedzen\u00e1. Napriek tomu, \u017ee pacienti maj\u00fa pr\u00edstup len k \u010diasto\u010dnej lie\u010dbe, mnoh\u00ed u\u017e za\u017eili jej v\u00fdrazn\u00e9 pozit\u00edvne \u00fa\u010dinky.Existuje mno\u017estvo pr\u00edbehov, kde lie\u010dba pomohla pacientom vr\u00e1ti\u0165 sa z kritick\u00e9ho zdravotn\u00e9ho stavu sp\u00e4\u0165 do norm\u00e1lneho \u017eivota. <\/span><\/span><\/p>\n

Po ne\u00faspe\u0161n\u00fdch rokovaniach v roku 2023 sa v\u0161ak op\u00e4\u0165 otv\u00e1raj\u00fa mo\u017enosti na roz\u0161\u00edrenie dostupnosti lie\u010dby pomocou CFTR modul\u00e1torov Kaftrio a Kalydeco. V tejto s\u00favislosti z\u00e1stupcovia pacientskych organiz\u00e1ci\u00ed Klub cystickej fibr\u00f3zy,<\/strong> Slovensk\u00e1 asoci\u00e1cia cystickej fibr\u00f3zy<\/strong> a Slovensk\u00e1 aliancia zriedkav\u00fdch chor\u00f4b<\/strong>, podnikaj\u00fa kroky na presadenie tohto roz\u0161\u00edrenia lie\u010dby a preukazuj\u00fa, \u017ee spolo\u010dnos\u0165 m\u00e1 z\u00e1ujem zabezpe\u010di\u0165 pacientom t\u00fato lie\u010dbu v plnej mo\u017enej miere. <\/span><\/span><\/p>\n

Z\u00e1stupcovia Klubu CF a komunita okolo pacientov iniciovali pet\u00edciu, ktor\u00fa podporilo u\u017e viac ako 21 000 ob\u010danov<\/strong> Slovenskej republiky. Tak\u00e1to mas\u00edvna podpora n\u00e1m poskytuje siln\u00fa motiv\u00e1ciu a je ve\u013ekou oporou v na\u0161om \u00fasil\u00ed. <\/span><\/span><\/p>\n

K tejto t\u00e9me sme zorganizovali tla\u010dov\u00fa konferenciu<\/strong>, na ktor\u00fa sme pozvali m\u00e9di\u00e1, aby sme mohli verejne po\u010fakova\u0165 za podporu a z\u00e1rove\u0148 apelova\u0165 na zodpovedn\u00e9 strany, aby kone\u010dne na\u0161li rie\u0161enie pre pacientov, ktor\u00ed na svoju lie\u010dbu st\u00e1le \u010dakaj\u00fa.<\/strong> <\/span><\/span><\/p>\n

Podpora m\u00e9di\u00ed je pre n\u00e1s rovnako d\u00f4le\u017eit\u00e1 ako podpora ob\u010danov, preto\u017ee pr\u00e1ve m\u00e9dia m\u00f4\u017eu \u0161\u00edri\u0165 povedomie o tomto zriedkavom ochoren\u00ed a o tom, \u017ee \u00fa\u010dinn\u00e1 lie\u010dba u\u017e existuje. Report\u00e1\u017ee na t\u00fato t\u00e9mu m\u00f4\u017eete vidie\u0165 na odkaze ni\u017e\u0161ie. V mene v\u0161etk\u00fdch pacientov s cystickou fibr\u00f3zou srde\u010dne \u010fakujeme za va\u0161u podporu.<\/span><\/span><\/strong><\/p>\n

ODKAZY :<\/p>\n

TASR<\/a>  TV JOJ<\/a>  NOV\u00dd \u010cAS<\/a><\/h1>\n

 \"\"\"\" \"\"<\/h1>\n

Tlac\u030cova\u0301 spra\u0301va_Klub CF_21 000 podpisov<\/a> <\/strong><\/h2>\n

\"\" \"\"<\/p>\n

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

DOSTUPNOS\u0164 PR\u00cd\u010cINNEJ LIE\u010cBY NA SLOVENSKU V s\u00fa\u010dasnosti je na Slovensku dostupnos\u0165 lie\u010dby cystickej fibr\u00f3zy (CF) v porovnan\u00ed s ostatn\u00fdmi krajinami regi\u00f3nu st\u00e1le obmedzen\u00e1. Napriek tomu, \u017ee pacienti maj\u00fa pr\u00edstup len k \u010diasto\u010dnej lie\u010dbe, mnoh\u00ed u\u017e za\u017eili jej v\u00fdrazn\u00e9 pozit\u00edvne \u00fa\u010dinky.Existuje mno\u017estvo pr\u00edbehov, kde lie\u010dba pomohla pacientom vr\u00e1ti\u0165 sa z kritick\u00e9ho zdravotn\u00e9ho stavu sp\u00e4\u0165 do norm\u00e1lneho […]<\/p>\n","protected":false},"author":1,"featured_media":1802,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-1789","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nezaradene"],"yoast_head":"\n- klubcf.sk<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/klubcf.sk\/index.php\/2025\/01\/16\/1789\/\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"- klubcf.sk\" \/>\n<meta property=\"og:description\" content=\"DOSTUPNOS\u0164 PR\u00cd\u010cINNEJ LIE\u010cBY NA SLOVENSKU V s\u00fa\u010dasnosti je na Slovensku dostupnos\u0165 lie\u010dby cystickej fibr\u00f3zy (CF) v porovnan\u00ed s ostatn\u00fdmi krajinami regi\u00f3nu st\u00e1le obmedzen\u00e1. Napriek tomu, \u017ee pacienti maj\u00fa pr\u00edstup len k \u010diasto\u010dnej lie\u010dbe, mnoh\u00ed u\u017e za\u017eili jej v\u00fdrazn\u00e9 pozit\u00edvne \u00fa\u010dinky.Existuje mno\u017estvo pr\u00edbehov, kde lie\u010dba pomohla pacientom vr\u00e1ti\u0165 sa z kritick\u00e9ho zdravotn\u00e9ho stavu sp\u00e4\u0165 do norm\u00e1lneho […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/klubcf.sk\/index.php\/2025\/01\/16\/1789\/\" \/>\n<meta property=\"og:site_name\" content=\"klubcf.sk\" \/>\n<meta property=\"article:published_time\" content=\"2025-01-16T12:44:17+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-01-16T12:53:42+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/klubcf.sk\/wp-content\/uploads\/2025\/01\/rodi\u010dia-CF1.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1449\" \/>\n\t<meta property=\"og:image:height\" content=\"551\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" 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