{"id":1889,"date":"2025-06-24T21:27:38","date_gmt":"2025-06-24T19:27:38","guid":{"rendered":"http:\/\/klubcf.sk\/?p=1889"},"modified":"2025-06-24T21:29:59","modified_gmt":"2025-06-24T19:29:59","slug":"cinnost-klubu-cf-za-mesiace-marec-jun-2025","status":"publish","type":"post","link":"https:\/\/klubcf.sk\/index.php\/2025\/06\/24\/cinnost-klubu-cf-za-mesiace-marec-jun-2025\/","title":{"rendered":"\u010cinnos\u0165 Klubu CF za mesiace Marec &#8211; J\u00fan 2025"},"content":{"rendered":"<p><strong>V\u00e1\u017een\u00e9 \u010dlenky, v\u00e1\u017een\u00ed \u010dlenovia Klubu CF,<\/strong><\/p>\n<p>dovo\u013ete mi, aby som v\u00e1m v mene Klubu CF priniesla stru\u010dn\u00fa spr\u00e1vu o na\u0161ej \u010dinnosti za obdobie marec a\u017e j\u00fan 2025.<\/p>\n<p>Po\u010das t\u00fdchto mesiacov sme sa intenz\u00edvne venovali aktivit\u00e1m v oblasti v\u00fdvoja legislat\u00edvy. Ako komunita sme spolo\u010dne podporili hromadn\u00fa pripomienku k pripravovanej vyhl\u00e1\u0161ke. V\u010faka spolupr\u00e1ci so Slovenskou asoci\u00e1ciou zriedkav\u00fdch chor\u00f4b (SAZCH) sa n\u00e1m podarilo medializova\u0165 t\u00e9mu dostupnosti modernej lie\u010dby cystickej fibr\u00f3zy \u2013 tzv. modul\u00e1torov \u2013 vo viacer\u00fdch m\u00e9di\u00e1ch. Ver\u00edme, \u017ee aj v\u010faka tejto pozornosti sa podar\u00ed zabezpe\u010di\u0165 spravodlivej\u0161\u00ed pr\u00edstup k lie\u010dbe.<\/p>\n<p>\u00daprimne \u010fakujeme v\u0161etk\u00fdm, ktor\u00ed sa do procesu akt\u00edvne zapojili \u2013 \u010di u\u017e podporou pripomienky, alebo vlastn\u00fdmi vstupmi do medzirezortn\u00e9ho pripomienkov\u00e9ho konania. Va\u0161e hlasy pomohli zd\u00f4razni\u0165, \u017ee ide o lie\u010dbu, ktor\u00e1 re\u00e1lne men\u00ed \u017eivoty \u013eud\u00ed s CF, a \u017ee Slovensko ako posledn\u00e1 krajina v E\u00da nem\u00f4\u017ee \u010falej odklada\u0165 rozhodnutie o ich plnej \u00fahrade.<\/p>\n<p>Za Klub CF sa na\u0161e \u010dlenky Lenka Kalafutov\u00e1 a Veronika Buranovsk\u00e1 z\u00fa\u010dastnili in\u0161tal\u00e1cie symbolick\u00fdch pres\u00fdpac\u00edch hod\u00edn na Ministerstve zdravotn\u00edctva v r\u00e1mci projektu&nbsp;<i>Zrnko \u010dasu<\/i>. Pri tejto pr\u00edle\u017eitosti mali mo\u017enos\u0165 osobne hovori\u0165 aj s p\u00e1nom ministrom zdravotn\u00edctva.<\/p>\n<p>Za\u010diatkom j\u00fana som sa osobne z\u00fa\u010dastnila pracovn\u00e9ho stretnutia na Ministerstve zdravotn\u00edctva SR, kde sme dostali v\u00fdklad k pripravovanej vyhl\u00e1\u0161ke a priestor na diskusiu a kladenie ot\u00e1zok. Boli sme z\u00e1rove\u0148 informovan\u00ed o pl\u00e1novan\u00fdch zmen\u00e1ch z\u00e1kona o \u00fahrad\u00e1ch liekov, do ktor\u00fdch diskusi\u00ed bude prizvan\u00e9 aj na\u0161e zdru\u017eenie.<\/p>\n<p>T\u00edm pod veden\u00edm Ingrid Vach\u00e1lkovej pripravil \u017eiados\u0165 o grant&nbsp;SK-NIC&nbsp;na projekt rehabilita\u010dn\u00fdch vide\u00ed pre dospel\u00fdch pacientov s CF. Moment\u00e1lne \u010dak\u00e1me na v\u00fdsledky hodnotenia.<\/p>\n<p>Z \u00faspe\u0161ne z\u00edskan\u00e9ho grantu Nad\u00e1cia ZSE sme zorganizovali tri pr\u00edjemn\u00e9 stretnutia pre opatrovate\u013eov pacientov s CF \u2013 v Banskej Bystrici, Skalici a Bratislave. Stretnutia boli zameran\u00e9 na akt\u00edvny oddych a relax pri cvi\u010den\u00ed pilatesu. V septembri pl\u00e1nujeme druh\u00e9 kolo t\u00fdchto stretnut\u00ed a budeme ve\u013emi radi, ak sa k n\u00e1m prid\u00e1te.<\/p>\n<p>V klube z\u00e1rove\u0148 prebehli pr\u00edpravy na \u00fa\u010das\u0165 na&nbsp;<strong>Dni zdravia v \u010cadci<\/strong>, ktor\u00fd sa uskuto\u010dn\u00ed 5. j\u00fala. \u010eakujeme Alenke Heglasovej za organiz\u00e1ciu tejto aktivity. Po rokoch sa tak op\u00e4\u0165 objav\u00edme na verejnom podujat\u00ed s cie\u013eom \u0161\u00edri\u0165 inform\u00e1cie o cystickej fibr\u00f3ze a mo\u017enostiach jej lie\u010dby.<\/p>\n<p>V\u010faka Katke Her\u00e1kovej m\u00e1me pripraven\u00fd nov\u00fd, modern\u00fd informa\u010dn\u00fd banner pre propaga\u010dn\u00e9 \u00fa\u010dely. Na podujat\u00ed n\u00e1s podpor\u00ed aj fyzioterapeutka Petra Kolcunov\u00e1 \u2013 odborn\u00ed\u010dka na respira\u010dn\u00fa fyzioterapiu u det\u00ed s CF.<\/p>\n<p>\u010eakujem v\u0161etk\u00fdm, ktor\u00ed sa akoko\u013evek zapojili do aktiv\u00edt klubu v tomto obdob\u00ed. Va\u0161a anga\u017eovanos\u0165 m\u00e1 skuto\u010dn\u00fd vplyv a prispieva k tomu, aby sa hlas \u013eud\u00ed s CF v spolo\u010dnosti aj pred z\u00e1konodarcami nestr\u00e1cal.<\/p>\n<p>S \u00factou a srde\u010dn\u00fdm pozdravom,<br \/>\n<strong>Krist\u00edna Baloghov\u00e1<\/strong><br \/>\npredsedn\u00ed\u010dka Klubu CF<\/p>\n","protected":false},"excerpt":{"rendered":"<p>V\u00e1\u017een\u00e9 \u010dlenky, v\u00e1\u017een\u00ed \u010dlenovia Klubu CF, dovo\u013ete mi, aby som v\u00e1m v mene Klubu CF priniesla stru\u010dn\u00fa spr\u00e1vu o na\u0161ej \u010dinnosti za obdobie marec a\u017e j\u00fan 2025. Po\u010das t\u00fdchto mesiacov sme sa intenz\u00edvne venovali aktivit\u00e1m v oblasti v\u00fdvoja legislat\u00edvy. Ako komunita sme spolo\u010dne podporili hromadn\u00fa pripomienku k pripravovanej vyhl\u00e1\u0161ke. V\u010faka spolupr\u00e1ci so Slovenskou asoci\u00e1ciou zriedkav\u00fdch [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":1892,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-1889","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-klub-cf"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>\u010cinnos\u0165 Klubu CF za mesiace Marec - J\u00fan 2025 - 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\/06\/24\/cinnost-klubu-cf-za-mesiace-marec-jun-2025\/\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u010cinnos\u0165 Klubu CF za mesiace Marec - J\u00fan 2025 - klubcf.sk\" \/>\n<meta property=\"og:description\" content=\"V\u00e1\u017een\u00e9 \u010dlenky, v\u00e1\u017een\u00ed \u010dlenovia Klubu CF, dovo\u013ete mi, aby som v\u00e1m v mene Klubu CF priniesla stru\u010dn\u00fa spr\u00e1vu o na\u0161ej \u010dinnosti za obdobie marec a\u017e j\u00fan 2025. 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