{"id":1567,"date":"2020-05-05T15:34:36","date_gmt":"2020-05-05T13:34:36","guid":{"rendered":"http:\/\/klubcf.sk\/?p=1567"},"modified":"2021-02-23T14:00:30","modified_gmt":"2021-02-23T13:00:30","slug":"neodkladajte-dostupnost-pricinnej-liecby-pre-deti-dospelych-pacientov-s-cystickou-fibrozou-na-slovensku","status":"publish","type":"post","link":"https:\/\/klubcf.sk\/index.php\/2020\/05\/05\/neodkladajte-dostupnost-pricinnej-liecby-pre-deti-dospelych-pacientov-s-cystickou-fibrozou-na-slovensku\/","title":{"rendered":"NEODKLADAJTE DOSTUPNOS\u0164 PR\u00cd\u010cINNEJ LIE\u010cBY PRE DETI A DOSPEL\u00ddCH PACIENTOV S CYSTICKOU FIBR\u00d3ZOU NA SLOVENSKU"},"content":{"rendered":"<p>Pre Ministerstvo zdravotn\u00edctva, \u00darad vl\u00e1dy SR, kancel\u00e1riu prezidentky SR, V\u0160ZP, pois\u0165ovne D\u00f4vera, UNION, AOPP, SUKL.<br \/>\nV mene organiz\u00e1ci\u00ed rodi\u010dov a pacientov s Cystickou Fibr\u00f3zou n\u00e1m dovo\u013ete vyslovi\u0165 prosbu a v\u00fdzvu<br \/>\nNEODKLADAJTE DOSTUPNOS\u0164<br \/>\nPR\u00cd\u010cINNEJ LIE\u010cBY PRE DETI A DOSPEL\u00ddCH PACIENTOV S CYSTICKOU FIBR\u00d3ZOU NA SLOVENSKU<br \/>\nPrv\u00e1 pr\u00ed\u010dinn\u00e1 lie\u010dba, lie\u010di pr\u00ed\u010dinu CF, nie sympt\u00f3my. Chybne vytvoren\u00fa bielkovinu v bunke oprav\u00ed a odstr\u00e1ni z\u00e1kladn\u00fd mechanizmus choroby. N\u00e1prava prierezovo pre<span class=\"text_exposed_show\">ch\u00e1dza organizmom pacienta, zastav\u00ed, zvr\u00e1ti progresiu a devast\u00e1ciu org\u00e1nov. M\u00e1 \u00fa\u017easn\u00e9 v\u00fdsledky zo \u0161t\u00fadi\u00ed aj re\u00e1lnej aplik\u00e1cie v \u017eivotoch pacientov.<br \/>\nKe\u010f sa pod\u00e1 v\u010das prid\u00e1va pacientom desiatky rokov \u017eivota, vracia pacientov do spolo\u010dnosti. Na\u0161im pacientom be\u017e\u00ed \u010das ka\u017ed\u00fdm d\u0148om.<br \/>\nVo svete dostupn\u00e1 od roku 2012 teraz u\u017e v desiatkach kraj\u00edn, ktor\u00e9 st\u00e1le prib\u00fadaj\u00fa. Pacienti s lie\u010dbou s\u00fa u\u017e napr\u00edklad aj v \u010cesku.<br \/>\nLie\u010dba bola schv\u00e1len\u00e1 FDA a EMA \u010dasto v zr\u00fdchlen\u00fdch konaniach. Je to riadna, bielkovinn\u00e1, nie experiment\u00e1lna lie\u010dba. Bola schv\u00e1len\u00e1 v krajin\u00e1ch, ktor\u00e9 maj\u00fa tis\u00edce pacientov. Odstra\u0148uje symptomatick\u00fa lie\u010dbu, m\u00e1 ekonomick\u00e9 pr\u00ednosy, bezpe\u010dnos\u0165, \u00fa\u010dinnos\u0165, efekt\u00edvnos\u0165, sp\u013a\u0148a v\u0161etky z\u00e1konn\u00e9 podmienky.<br \/>\nLie\u010dba m\u00e1 podporu na\u0161ich zdravotn\u00fdch pracovn\u00edkov.<br \/>\nLie\u010dba nie je drah\u00e1. Odklady boli vyu\u017eit\u00e9 na ver\u00edme \u00faspe\u0161n\u00e9 rokovania. Lie\u010dba obsahuje prielom, lie\u010di pr\u00ed\u010dinu, je pre p\u00e1r pacientov a zriedkav\u00e9 ochoreniea predstavuje nepatrn\u00fd zlomok n\u00e1kladov, ktor\u00e9 denne vynaklad\u00e1 na\u0161a spolo\u010dnos\u0165.<br \/>\nNa\u0161i pacienti postihnut\u00ed devast\u00e1ciou org\u00e1nov maj\u00fa plne zdrav\u00fd intelekt a dosahuj\u00fa \u00fa\u017easn\u00e9 v\u00fdsledky napriek chorobe pri zaraden\u00ed sa do spolo\u010dnosti.<br \/>\nNa dostupnos\u0165 lie\u010dby na Slovensku \u010dak\u00e1me deviaty rok, najprv zo strany v\u00fdrobcu a teraz na rozhodnutie Slovensk\u00fdch org\u00e1nov 7 mesiac. Ka\u017ed\u00fd rok umieraj\u00fa na CF pacienti, ktor\u00ed u\u017e zomrie\u0165 nemusia. Existuje lie\u010dba.<br \/>\n\u010eakujeme pekne za organiz\u00e1cie, pacientov a ich rodiny<br \/>\nKlub Cystickej Fibr\u00f3zy<br \/>\nSlovensk\u00e1 Asoci\u00e1cia Cystickej Fibr\u00f3zy<br \/>\nPriatelia slan\u00fdch det\u00ed<\/span><\/p>\n<p><a href=\"http:\/\/klubcf.sk\/wp-content\/uploads\/2020\/05\/PROSBA-A-V\u00ddZVA-ORGANIZ\u00c1CIE-RODI\u010cOV-A-PACIENTOV-S-CYSTICKOU-FIBR\u00d3ZOU.pdf\">PROSBA A V\u00ddZVA &#8211; ORGANIZ\u00c1CIE RODI\u010cOV A PACIENTOV S CYSTICKOU FIBR\u00d3ZOU<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Pre Ministerstvo zdravotn\u00edctva, \u00darad vl\u00e1dy SR, kancel\u00e1riu prezidentky SR, V\u0160ZP, pois\u0165ovne D\u00f4vera, UNION, AOPP, SUKL. V mene organiz\u00e1ci\u00ed rodi\u010dov a pacientov s Cystickou Fibr\u00f3zou n\u00e1m dovo\u013ete vyslovi\u0165 prosbu a v\u00fdzvu NEODKLADAJTE DOSTUPNOS\u0164 PR\u00cd\u010cINNEJ LIE\u010cBY PRE DETI A DOSPEL\u00ddCH PACIENTOV S CYSTICKOU FIBR\u00d3ZOU NA SLOVENSKU Prv\u00e1 pr\u00ed\u010dinn\u00e1 lie\u010dba, lie\u010di pr\u00ed\u010dinu CF, nie sympt\u00f3my. Chybne vytvoren\u00fa bielkovinu [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":1569,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"footnotes":""},"categories":[10],"tags":[],"class_list":["post-1567","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-vyskum-a-vyvoj"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>NEODKLADAJTE DOSTUPNOS\u0164 PR\u00cd\u010cINNEJ LIE\u010cBY PRE DETI A DOSPEL\u00ddCH PACIENTOV S CYSTICKOU FIBR\u00d3ZOU NA SLOVENSKU - 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\/2020\/05\/05\/neodkladajte-dostupnost-pricinnej-liecby-pre-deti-dospelych-pacientov-s-cystickou-fibrozou-na-slovensku\/\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"NEODKLADAJTE DOSTUPNOS\u0164 PR\u00cd\u010cINNEJ LIE\u010cBY PRE DETI A DOSPEL\u00ddCH PACIENTOV S CYSTICKOU FIBR\u00d3ZOU NA SLOVENSKU - klubcf.sk\" \/>\n<meta property=\"og:description\" content=\"Pre Ministerstvo zdravotn\u00edctva, \u00darad vl\u00e1dy SR, kancel\u00e1riu prezidentky SR, V\u0160ZP, pois\u0165ovne D\u00f4vera, UNION, AOPP, SUKL. V mene organiz\u00e1ci\u00ed rodi\u010dov a pacientov s Cystickou Fibr\u00f3zou n\u00e1m dovo\u013ete vyslovi\u0165 prosbu a v\u00fdzvu NEODKLADAJTE DOSTUPNOS\u0164 PR\u00cd\u010cINNEJ LIE\u010cBY PRE DETI A DOSPEL\u00ddCH PACIENTOV S CYSTICKOU FIBR\u00d3ZOU NA SLOVENSKU Prv\u00e1 pr\u00ed\u010dinn\u00e1 lie\u010dba, lie\u010di pr\u00ed\u010dinu CF, nie sympt\u00f3my. Chybne vytvoren\u00fa bielkovinu [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/klubcf.sk\/index.php\/2020\/05\/05\/neodkladajte-dostupnost-pricinnej-liecby-pre-deti-dospelych-pacientov-s-cystickou-fibrozou-na-slovensku\/\" \/>\n<meta property=\"og:site_name\" content=\"klubcf.sk\" \/>\n<meta property=\"article:published_time\" content=\"2020-05-05T13:34:36+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2021-02-23T13:00:30+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/klubcf.sk\/wp-content\/uploads\/2020\/05\/N\u00e1vrh-bez-n\u00e1zvu-6.png\" \/>\n\t<meta property=\"og:image:width\" content=\"820\" \/>\n\t<meta property=\"og:image:height\" content=\"312\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"klubcf123\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Autor\" \/>\n\t<meta name=\"twitter:data1\" content=\"klubcf123\" \/>\n\t<meta name=\"twitter:label2\" content=\"Predpokladan\u00fd \u010das \u010d\u00edtania\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 min\u00faty\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/klubcf.sk\/index.php\/2020\/05\/05\/neodkladajte-dostupnost-pricinnej-liecby-pre-deti-dospelych-pacientov-s-cystickou-fibrozou-na-slovensku\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/klubcf.sk\/index.php\/2020\/05\/05\/neodkladajte-dostupnost-pricinnej-liecby-pre-deti-dospelych-pacientov-s-cystickou-fibrozou-na-slovensku\/\"},\"author\":{\"name\":\"klubcf123\",\"@id\":\"https:\/\/klubcf.sk\/#\/schema\/person\/152c665d546b6961e696b60f88215719\"},\"headline\":\"NEODKLADAJTE DOSTUPNOS\u0164 PR\u00cd\u010cINNEJ LIE\u010cBY PRE DETI A DOSPEL\u00ddCH PACIENTOV S CYSTICKOU FIBR\u00d3ZOU NA SLOVENSKU\",\"datePublished\":\"2020-05-05T13:34:36+00:00\",\"dateModified\":\"2021-02-23T13:00:30+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/klubcf.sk\/index.php\/2020\/05\/05\/neodkladajte-dostupnost-pricinnej-liecby-pre-deti-dospelych-pacientov-s-cystickou-fibrozou-na-slovensku\/\"},\"wordCount\":397,\"commentCount\":0,\"image\":{\"@id\":\"https:\/\/klubcf.sk\/index.php\/2020\/05\/05\/neodkladajte-dostupnost-pricinnej-liecby-pre-deti-dospelych-pacientov-s-cystickou-fibrozou-na-slovensku\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/klubcf.sk\/wp-content\/uploads\/2020\/05\/N\u00e1vrh-bez-n\u00e1zvu-6.png\",\"articleSection\":[\"V\u00fdskum a v\u00fdvoj\"],\"inLanguage\":\"sk-SK\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\/\/klubcf.sk\/index.php\/2020\/05\/05\/neodkladajte-dostupnost-pricinnej-liecby-pre-deti-dospelych-pacientov-s-cystickou-fibrozou-na-slovensku\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/klubcf.sk\/index.php\/2020\/05\/05\/neodkladajte-dostupnost-pricinnej-liecby-pre-deti-dospelych-pacientov-s-cystickou-fibrozou-na-slovensku\/\",\"url\":\"https:\/\/klubcf.sk\/index.php\/2020\/05\/05\/neodkladajte-dostupnost-pricinnej-liecby-pre-deti-dospelych-pacientov-s-cystickou-fibrozou-na-slovensku\/\",\"name\":\"NEODKLADAJTE DOSTUPNOS\u0164 PR\u00cd\u010cINNEJ LIE\u010cBY PRE DETI A DOSPEL\u00ddCH PACIENTOV S CYSTICKOU FIBR\u00d3ZOU NA SLOVENSKU - 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V mene organiz\u00e1ci\u00ed rodi\u010dov a pacientov s Cystickou Fibr\u00f3zou n\u00e1m dovo\u013ete vyslovi\u0165 prosbu a v\u00fdzvu NEODKLADAJTE DOSTUPNOS\u0164 PR\u00cd\u010cINNEJ LIE\u010cBY PRE DETI A DOSPEL\u00ddCH PACIENTOV S CYSTICKOU FIBR\u00d3ZOU NA SLOVENSKU Prv\u00e1 pr\u00ed\u010dinn\u00e1 lie\u010dba, lie\u010di pr\u00ed\u010dinu CF, nie sympt\u00f3my. 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