{"id":1608,"date":"2021-01-20T20:40:01","date_gmt":"2021-01-20T19:40:01","guid":{"rendered":"http:\/\/klubcf.sk\/?p=1608"},"modified":"2021-02-23T13:58:22","modified_gmt":"2021-02-23T12:58:22","slug":"cinnost-klubu-cf-za-rok-2020","status":"publish","type":"post","link":"https:\/\/klubcf.sk\/index.php\/2021\/01\/20\/cinnost-klubu-cf-za-rok-2020\/","title":{"rendered":"\u010cinnos\u0165 Klubu CF za rok 2020"},"content":{"rendered":"<h1 style=\"font-weight: 400;\">Mil\u00ed \u010dlenovia komunity &#8211; Klub cystickej fibr\u00f3zy.&nbsp;<\/h1>\n<p style=\"font-weight: 400;\">Sme ve\u013emi radi, \u017ee bola \u010dinnos\u0165 v roku 2020 pestr\u00e1 a do aktiv\u00edt klubu sa zapojilo viacero \u010dlenov komunity, ktor\u00ed ako zvy\u010dajne, pracuj\u00fa na b\u00e1ze dobrovo\u013enosti a&nbsp;vo svojom vo\u013enom \u010dase.<\/p>\n<p style=\"font-weight: 400;\">&nbsp;Ako najv\u00e4\u010d\u0161\u00ed \u00faspech v roku 2020 vn\u00edmam, \u017ee sme mohli podpori\u0165 na\u0161imi silami kategoriz\u00e1ciu lieku Orkambi (ve\u013ek\u00e1 medializ\u00e1cia,kampa\u0148 Dych ber\u00faci \u017eivot, blogy, pet\u00edcia, propaga\u010dn\u00e9 materi\u00e1ly, tla\u010dov\u00e9 spr\u00e1vy TASR, \u00fa\u010das\u0165 na stretnutiach na MZ a v in\u00fdch \u0161t\u00e1tnych in\u0161tit\u00faci\u00e1ch). Pracovn\u00fa skupinu viedol Peter \u0160tep\u00e1nek. Je to asi najv\u00e4\u010d\u0161\u00ed \u00faspech nielen minul\u00e9ho roka.<\/p>\n<p style=\"font-weight: 400;\">&nbsp;<\/p>\n<p style=\"font-weight: 400;\">No rok 2020 nebol len o Orkambi, ale podarilo sa robi\u0165 aj \u010fal\u0161ie veci.<\/p>\n<ul>\n<li style=\"font-weight: 400;\">Klub CF zorganizoval ve\u013emi \u00faspe\u0161n\u00fa pet\u00edciu&nbsp;za prepl\u00e1canie modernej lie\u010dby pre pacientov s cystickou fibr\u00f3zou, ktor\u00fa podporilo 18 994 hlasov.&nbsp;<\/li>\n<li style=\"font-weight: 400;\">Klub po\u010das 1. vlny pand\u00e9mie prispel k&nbsp;zabezpe\u010deniu on-line besied rodi\u010dov a&nbsp;pacientov s&nbsp;pani MuDr. Bli\u017en\u00e1kovou.<\/li>\n<li style=\"font-weight: 400;\">Po\u010das prvej vlny pand\u00e9mie dostal Klub CF darom od firmy Vesel\u00e9 r\u00fa\u0161ka, bavlnen\u00e9 ochrann\u00e9 r\u00fa\u0161ka, ktor\u00e9 sme zaslali do v\u0161etk\u00fdch CF centier.&nbsp;<\/li>\n<li style=\"font-weight: 400;\">Po\u010das pand\u00e9mie Klub CF zabezpe\u010dil produkty od firmy Respilon pre svojich \u010dlenov v&nbsp;maxim\u00e1lnej mo\u017enej miere a&nbsp;s&nbsp;50% z\u013eavou z ceny.<\/li>\n<li style=\"font-weight: 400;\">Klub na z\u00e1klade z\u00e1ujmu z&nbsp;on-line dotazn\u00edka zabezpe\u010dil v spolupr\u00e1ci s MR Diagnostic sety k&nbsp;zariadeniu Simeox vo v\u00fdhodnej cene.<\/li>\n<li style=\"font-weight: 400;\">\u010clenovia klubu sa akt\u00edvne zap\u00e1jali v&nbsp;maxim\u00e1lnej mo\u017enej miere do zatia\u013e neukon\u010den\u00e9ho procesu kategoriz\u00e1cie pr\u00edstroja Simeox.<\/li>\n<li style=\"font-weight: 400;\">Tie\u017e sa podarilo z\u00edska\u0165 2 granty &#8211; Jeden na zak\u00fapenie \u0161tyroch setov k&nbsp;pr\u00edstroju Simeox, ktor\u00e9 bud\u00fa distribuovan\u00e9 do centier CF, ktor\u00e9 pr\u00edstroj u\u017e vlastnia. Druh\u00fd na z\u00e1klade z\u00e1ujmu z&nbsp;on-line dotazn\u00edka zabezpe\u010dil vo v\u00fdhodnej cene sety k&nbsp;zariadeniu Simeox. ZI\u0161lo o grant z Nad\u00e1cie Mark\u00edza &#8211; sety pre CF centr\u00e1 v Bratislave (deti) a&nbsp;Banskej Bystrici (dospel\u00ed), kde pr\u00edstroje Simeox maj\u00fa.&nbsp;<\/li>\n<li>Klub daroval 10 x set tube 10 od spolo\u010dnosti MR diagnostic pre pacientov so Simeoxom pod\u013ea dotazn\u00edka.&nbsp;<\/li>\n<li>Darovali sme taktie\u017e solmucol&nbsp;pre pacientov, ktor\u00ed ho pou\u017e\u00edvaj\u00fa z dotazn\u00edka.&nbsp;<\/li>\n<li>&nbsp;Pracovn\u00e1 skupina pre modern\u00fa lie\u010dbu (5 rodi\u010dov CF pacientov+ 1 pacientka, z\u00e1stupky\u0148a ACHZ a&nbsp;Asoci\u00e1cia CF) vyv\u00edja aktivity pre dosiahnutie zmeny v&nbsp;legislat\u00edve tak, aby na SK bola definovan\u00e1 zriedkav\u00e1 choroba rovnako ako je to v&nbsp;legislat\u00edve E\u00da. Chceme t\u00fdm dosiahnu\u0165, aby sa modern\u00e1 lie\u010dba k&nbsp;n\u00e1m dostala \u010do najsk\u00f4r.<\/li>\n<li>Pr\u00e1ve prebieha finaliz\u00e1cia grantov\u00e9ho projektu, ktor\u00fd bol zameran\u00fd na vytvorenie e-learningov\u00fdch vide\u00ed k&nbsp;tak potrebnej p\u013e\u00facnej rehabilit\u00e1ci\u00ed v spolupr\u00e1ci s fyzioterapeutkami p. Kolcunovou a p. Jan\u010dekovou.<\/li>\n<li style=\"font-weight: 400;\">Pod z\u00e1\u0161titou klubu sa realizoval aj projekt \u0161portom ku zdraviu,<\/li>\n<li>Klub prispel na dar\u010deky pre deti do Adventn\u00e9ho kalend\u00e1ra pred Vianocami.&nbsp;<\/li>\n<li>Klub CF sprostredkoval finan\u010dn\u00fa podporu od pois\u0165ovne Metlife na rekon\u0161trukciu k\u00fape\u013ene v rodinnom dome.<\/li>\n<li>Klub CF podporil z 2%&nbsp;pr\u00edspevkom soci\u00e1lne slab\u0161ie rodiny, ktor\u00e9 po\u017eiadali o pomoc.&nbsp;<\/li>\n<li>Klub zabezpe\u010dil pr\u00e1vnu pomoc pri vybavovan\u00ed odvolania v r\u00e1mci s\u00fadneho jednania oh\u013eadom opatrovate\u013esk\u00e9ho pr\u00edspevku pre rodinu pacienta s CF.&nbsp;<\/li>\n<li>Klub CF dlhodobo spolupracuje a podporuje v\u00fdvoj a inov\u00e1cie aplik\u00e1cie CF Hero na Slovensku.&nbsp;<\/li>\n<li>Z&nbsp;finan\u010dn\u00fdch prostriedkov z&nbsp;2% sa zak\u00fapil mobiln\u00fd spirometer a pulzn\u00fd oxymeter pre CF centrum pre dospel\u00fdch v&nbsp;Banskej Bystrici, na z\u00e1klade dotazn\u00edka zaslan\u00e9ho CF centr\u00e1m.&nbsp;<\/li>\n<li>Darom od podporovate\u013eov sme vybavili ods\u00e1va\u010dku do detsk\u00e9ho CF centra v&nbsp;Bratislave a e\u0161te doru\u010dujeme aj scaner do tejto ambulancie.<\/li>\n<li>\u010clenovia klubu pomohli po\u010das 1 vlny pand\u00e9mie pres\u0165ahova\u0165 a uskladni\u0165 chladni\u010dky a TV, z&nbsp;Fakultnej nemocnice Bratislava-Ru\u017einov (inak by ich vyhodili).<\/li>\n<li>\u010clenovia klubu sa postarali o detsk\u00fd k\u00fatik pri Ambulancii CF v PB v Bratislave&nbsp;<\/li>\n<li>\u010eakujeme v\u0161etk\u00fdm \u010dlenom klubu, ktor\u00ed pomohli aj tentno rok zrealizova\u0165 a spropagova\u0165 De\u0148 slan\u00fdch vetern\u00edkov vo svojom okol\u00ed.&nbsp;<\/li>\n<li>Po\u010das roku 2020 sa \u010dlenovia Klubu CF akt\u00edvne z\u00fa\u010das\u0165novali na nat\u00e1\u010dan\u00ed rel\u00e1ci\u00ed, ktor\u00e1 sa venuje Cystickej fibr\u00f3ze pod veden\u00edm Adriany Kmotr\u00edkovej na TA3.<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<p>Na rok 2021 s\u00fa napl\u00e1novan\u00e9 a&nbsp;aj prebiehaj\u00fa \u010fal\u0161ie \u010dinnosti.<\/p>\n<ul>\n<li>Od roku 2019 prebieha intenz\u00edvna spolupr\u00e1ca v&nbsp;zast\u00fapen\u00ed CF rodi\u010dov z&nbsp;Ko\u0161\u00edc, Slovenskej Asoci\u00e1cie Cystickej Fibr\u00f3zy a&nbsp;Technickej Univerzity v&nbsp;Ko\u0161iciach pri rekon\u0161trukci\u00e1ch izieb v&nbsp;Ko\u0161ickom detskom CF centre.&nbsp;<\/li>\n<li style=\"font-weight: 400;\">V&nbsp; t\u00fdchto d\u0148och odi\u0161iel ofici\u00e1lny list Klubu CF a Slovenskej Asoci\u00e1cie Cystickej Fibr\u00f3zy na Ministerstvo Zdravotn\u00edctva a \u00darad Hlavn\u00e9ho hygienika, aby pacienti s CF neboli opomenut\u00ed v 2.vlne o\u010dkovania, ako chronicky chor\u00ed.<\/li>\n<li style=\"font-weight: 400;\">V spolupr\u00e1ci s&nbsp;O.z. Mici a&nbsp;M\u0148au pripravujeme stretnutie rodi\u010dov a psychol\u00f3gov z O.z. Plamienok na t\u00e9mu: Dospievanie s CF.&nbsp;<\/li>\n<li>V&nbsp;s\u00fa\u010dasnosti akt\u00edvne h\u013ead\u00e1me nov\u00e9 skladov\u00e9, alebo kancel\u00e1rske priestory v&nbsp;Bratislave, aby sme zn\u00ed\u017eili n\u00e1klady na kancel\u00e1riu v Ko\u0161iciach, ktor\u00e1 nie je vyu\u017e\u00edvan\u00e1. Prebieha komunik\u00e1cia s mestsk\u00fdmi \u010das\u0165ami Petr\u017ealka, Ru\u017einov, Karlova Ves.&nbsp;&nbsp;<\/li>\n<\/ul>\n<p>Ak sme na nie\u010do zabudli, nev\u00e1hajte n\u00e1m to pripomen\u00fa\u0165. \u010eakujeme&nbsp;<\/p>\n<h3 style=\"font-weight: 400;\"><strong>Pros\u00edme V\u00e1s, ak m\u00e1me kona\u0165 v&nbsp;mene komunity, je potrebn\u00e9 aby Klub CF bol aj ofici\u00e1lne po\u010detnej\u0161\u00ed.&nbsp;<\/strong><strong>\u010clenom sa m\u00f4\u017eete sta\u0165 vyplnen\u00edm dotazn\u00edka&nbsp;tu:&nbsp;<\/strong><\/h3>\n<blockquote class=\"wp-embedded-content\" data-secret=\"jms8lNgkoj\"><p><a href=\"http:\/\/klubcf.sk\/index.php\/2021\/01\/13\/dotaznik-pre-clena-klubu-cf-2021\/\">Dotazn\u00edk pre \u010dlena klubu CF 2021<\/a><\/p><\/blockquote>\n<p><iframe loading=\"lazy\" class=\"wp-embedded-content\" sandbox=\"allow-scripts\" security=\"restricted\" style=\"position: absolute; clip: rect(1px, 1px, 1px, 1px);\" src=\"http:\/\/klubcf.sk\/index.php\/2021\/01\/13\/dotaznik-pre-clena-klubu-cf-2021\/embed\/#?secret=jms8lNgkoj\" data-secret=\"jms8lNgkoj\" width=\"600\" height=\"338\" title=\"&#8220;Dotazn\u00edk pre \u010dlena klubu CF 2021&#8221; &#8212; klubcf.sk\" frameborder=\"0\" marginwidth=\"0\" marginheight=\"0\" scrolling=\"no\"><\/iframe><\/p>\n<p style=\"font-weight: 400;\">M\u00e1te n\u00e1pad na aktivitu prispievaj\u00facu k \u0161\u00edreniu povedomia o CF, alebo potrebujete poradi\u0165 \u010di vyrie\u0161i\u0165 nejak\u00fa konkr\u00e9tnu z\u00e1le\u017eitos\u0165? Nev\u00e1hajte sa na n\u00e1s obr\u00e1ti\u0165. Ka\u017ed\u00e1 aktivita a n\u00e1pad je v\u00edtan\u00fd.&nbsp;<\/p>\n<p style=\"font-weight: 400;\">klubcystickejfibrozy@gmail.com&nbsp;<\/p>\n<p style=\"font-weight: 400;\">Nezabudnite, klub sme my v\u0161etci &#8211; pacienti, rodi\u010dia, lek\u00e1ri, priatelia a podporovatelia!&nbsp;<\/p>\n<h1 style=\"font-weight: 400;\"><strong>\u010eAKUJEME&nbsp;<\/strong><\/h1>\n","protected":false},"excerpt":{"rendered":"<p>Mil\u00ed \u010dlenovia komunity &#8211; Klub cystickej fibr\u00f3zy.&nbsp; Sme ve\u013emi radi, \u017ee bola \u010dinnos\u0165 v roku 2020 pestr\u00e1 a do aktiv\u00edt klubu sa zapojilo viacero \u010dlenov komunity, ktor\u00ed ako zvy\u010dajne, pracuj\u00fa na b\u00e1ze dobrovo\u013enosti a&nbsp;vo svojom vo\u013enom \u010dase. &nbsp;Ako najv\u00e4\u010d\u0161\u00ed \u00faspech v roku 2020 vn\u00edmam, \u017ee sme mohli podpori\u0165 na\u0161imi silami kategoriz\u00e1ciu lieku Orkambi (ve\u013ek\u00e1 medializ\u00e1cia,kampa\u0148 [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":1618,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-1608","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 - 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