{"id":1098,"date":"2018-04-12T10:32:12","date_gmt":"2018-04-12T08:32:12","guid":{"rendered":"http:\/\/klubcf.sk\/?p=1098"},"modified":"2018-04-12T12:55:53","modified_gmt":"2018-04-12T10:55:53","slug":"v-bratislave-sa-uskutocnila-konferencia-o-cystickej-fibroze","status":"publish","type":"post","link":"https:\/\/klubcf.sk\/index.php\/2018\/04\/12\/v-bratislave-sa-uskutocnila-konferencia-o-cystickej-fibroze\/","title":{"rendered":"V Bratislave sa uskuto\u010dnila konferencia o Cystickej fibr\u00f3ze."},"content":{"rendered":"

7.apr\u00edla sa pod z\u00e1\u0161titou Kliniky detskej pneumol\u00f3gie a ftize\u00f3l\u00f3gie LFSZU, N\u00e1rodn\u00e9ho centra detsk\u00fdch chor\u00f4b Bratislava a Klubu cystickej fibr\u00f3zy <\/b><\/i>sa <\/b><\/i>uskuto\u010dnila konferencia pod n\u00e1zvom Novinky v starostlivosti a lie\u010dbe cystickej fibr\u00f3zy.<\/b><\/i> <\/span><\/p>\n

 <\/p>\n

Pred rodi\u010dov, odborn\u00edkov a z\u00e1ujemcov o problematiku cystickej fibr\u00f3zy sa postavili 6 odborn\u00edci, aby v kvalitn\u00fdch predn\u00e1\u0161kach predostreli aktu\u00e1lne inform\u00e1cie k danej problematike. Konferenciu sledovalo viac ako 30 \u00fa\u010dastn\u00edkov online, prostredn\u00edctvom kan\u00e1lu youtube, s mo\u017enos\u0165ou komentovania a kladenia ot\u00e1zok. <\/span><\/p>\n

Celkovo sa na konferencii z\u00fa\u010dastnilo 20 odborn\u00fdch pracovn\u00edkov a 80 z\u00e1ujemcov \u2013 rodi\u010dia, verejnos\u0165.<\/span><\/p>\n

 <\/p>\n

Novinky v starostlivosti a lie\u010dbe.<\/b><\/span><\/span><\/span><\/p>\n

 <\/p>\n

Ako prv\u00fd vyst\u00fapil <\/span>MUDr. \u0160tefan La\u0161\u0161\u00e1n PhD<\/b><\/span><\/span> <\/b>(GR sekcia zdravia, Ministerstvo zdravotn\u00edctva SR)<\/span>, aby n\u00e1m predstavil ako na Slovensku funguje, alebo mala by fungova\u0165 starostlivos\u0165 o pacienta s CF. <\/span><\/p>\n

Nasledovali predn\u00e1\u0161ky <\/span>Prof. MUDr. Pav<\/b><\/span><\/span>la<\/b><\/span><\/span> D\u0159ev\u00edn<\/b><\/span><\/span>ka<\/b><\/span><\/span> PhD <\/b><\/span><\/span>(2.L\u00e9k\u00e1\u0159ska fakulta Univerzita Karlova a FN Motol, Praha)<\/span>,<\/span> <\/b>ktor\u00e9 pon\u00fakli vh\u013ead najsk\u00f4r na lieky Kalydeco, Orkambi a Sy<\/span>m<\/span>deco. A v dr<\/span>u<\/span>hej predn\u00e1\u0161ke <\/span>po prest\u00e1vke, <\/span>sa p\u00e1n doktor venoval v\u00fdvoju nov\u00fdch liekov. T<\/span>ieto<\/span> predn\u00e1\u0161k<\/span>y<\/span> bola ve\u013emi obohacuj\u00fac<\/span>e<\/span> a nap\u013a\u0148a<\/span>j\u00fa<\/span> n\u00e1s n\u00e1dejou, \u017ee veda a v\u00fdskum skuto\u010dne napreduj\u00fa. <\/span><\/p>\n

\n

„V klinick\u00e9m v\u00fdzkumu se nach\u00e1z\u00ed mnoho nad\u011bjn\u00fdch l\u00e9\u010debn\u00fdch <\/b><\/i><\/span><\/span><\/span><\/p>\n

l\u00e1tek od r\u016fzn\u00fdch farmaceutick\u00fdch v\u00fdrobc\u016f. Krom\u011b firmy Vertex <\/b><\/i><\/span><\/span><\/p>\n

se jedn\u00e1 nap\u0159\u00edklad o spole\u010dnosti<\/b><\/i> <\/b><\/i>Galapagos\/Abbvie, Proteostasis, <\/b><\/i><\/span><\/span><\/p>\n

ProQR \u010di Flatley Discovery Lab, kter\u00e9 sv\u00e9 produkty dovedly <\/b><\/i><\/span><\/span><\/p>\n

do f\u00e1ze klinick\u00fdch test\u016f, zahrnuj\u00edc\u00edch pod\u00e1v\u00e1n\u00ed zkouman\u00e9ho p\u0159\u00edpravku <\/b><\/i><\/span><\/span><\/p>\n

pacient\u016fm s cystickou fibr\u00f3zou.“ <\/b><\/i><\/span><\/span><\/p>\n<\/blockquote>\n

 <\/p>\n

MUDr. Nina Bli\u017en\u00e1kov\u00e1, MUDr. Jaroslava Orosov\u00e1<\/b><\/span> <\/b>(KDPaF LF SZU a NUDCH Bratislava) pouk\u00e1zali vo svojej predn\u00e1\u0161ke, na nov\u00e9 aspekty lie\u010dby CF inhala\u010dn\u00fdmi antibiotikami. Aj v tejto oblasti napreduje veda a v\u00fdskum a sme za to nesmierne v\u010fa\u010dn\u00fd<\/p>\n

\n

„<\/b><\/i><\/span><\/span>Colobreath \u2013 Najv\u00e4\u010d\u0161\u00ed pokrok v pr\u00e1\u0161kovej inhal\u00e1cii, skracuje <\/b><\/i><\/span><\/span>\u010das potrebn\u00fd na podanie ka\u017edej d\u00e1vky o 1\/3 v porovnan\u00ed s nebuliz\u00e1ciou.“<\/b><\/i><\/p>\n<\/blockquote>\n

 <\/p>\n

Ako sa spr\u00e1vne stravova\u0165 a na \u010do vo v\u00fd\u017eive treba d\u00e1va\u0165 d\u00f4raz, n\u00e1m pripomenula a ozrejmila MUDr. Iveta Valachov\u00e1<\/b><\/span> <\/b>(Detsk\u00e1 fakultn\u00e1 nemocnica Bansk\u00e1 Bystrica).       <\/span><\/b><\/i><\/span><\/p>\n

\n

„Stav v\u00fd\u017eivy jedincov s cystickou fibr\u00f3zou zohr\u00e1va v\u00fdznamn\u00fa \u00falohu <\/span><\/span><\/b><\/i><\/span>nielen, \u010do sa t\u00fdka ich respira\u010dn\u00e9ho ochorenia, ale m\u00e1 vplyv<\/b><\/i><\/p>\n

aj na chorobnos\u0165, frekvenciu komplik\u00e1ci\u00ed z\u00e1kladn\u00e9ho ochorenia <\/b><\/i><\/span><\/span>a vpl\u00fdva aj na dobu pre\u017e\u00edvania.“<\/b><\/i><\/p>\n

                        <\/span><\/b><\/i><\/span><\/h1>\n<\/blockquote>\n

MUDr. Ingrid Mikul\u00e1\u0161ov\u00e1 <\/b><\/span>(V\u0161ZP a KDPaF LF SZU a NUDCH Bratislava) sa venovala ot\u00e1zkam spolupr\u00e1ce so zdravotn\u00fdmi pois\u0165ov\u0148ami. Akou formou a za ak\u00fdch podmienok sa kategorizuj\u00fa lieky a ak\u00e9 podmienky musia by\u0165 splnen\u00e9, aby boli v s\u00falade s platnou legislat\u00edvou.<\/span><\/span><\/p>\n

 <\/p>\n

MUDr. Anna Feketeov\u00e1<\/b><\/span> (<\/span>Detsk\u00e1 fakultn\u00e1 nemocnica Ko\u0161ice) pouk\u00e1zala na rizik\u00e1 RSV v\u00edrusov ako napr\u00edklad vy\u0161\u0161ia frekvencia exacerb\u00e1ci\u00ed, bronchi\u00e1lna hyperaktivita a hlavne podpora rastu biofilmu pseudomonas a. muk\u00f3zny kme\u0148. Ako prevenciu v\u00edrusov pouk\u00e1zala na d\u00f4le\u017eitos\u0165 o\u010dkovania napr. proti chr\u00edpke a pod\u00e1vania RSV imunoprofilaxie PALIVIZUMAB do veku dvoch rokov die\u0165a\u0165a plat\u00ed preskrip\u010dn\u00e9 obmedzenie, nutnos\u0165 schv\u00e1lenia rev\u00edznym lek\u00e1rom.<\/span><\/span><\/p>\n

 <\/p>\n

Z\u00e1ver a ver\u00edme \u017ee aj nov\u00fd za\u010diatok.<\/b><\/span><\/span><\/span><\/p>\n

Po predn\u00e1\u0161kach nasledovala ve\u013emi zauj\u00edmav\u00e1 diskusia a spolo\u010dn\u00fd obed na ktorom lek\u00e1ri a odborn\u00ed pracovn\u00edci trpezlivo odpovedali na na\u0161e ot\u00e1zky za \u010do sme im \u010fakujeme. <\/span><\/span><\/p>\n

Sme nesmierne v\u010fa\u010dn\u00ed aj za to, \u017ee pr\u00edprava a n\u00e1sledn\u00e1 realiz\u00e1cia konferencie dopadla v na\u0161ich o\u010diach ve\u013emi dobre a tento ro\u010dn\u00edk konferencie poklad\u00e1me za ve\u013emi \u00faspe\u0161n\u00fd a budeme sa sna\u017ei\u0165 aj na\u010falej vyv\u00edja\u0165 aktivity smeruj\u00face k sp\u00e1janiu \u013e\u00fad\u00ed v problematike CF. <\/span><\/span><\/p>\n

\u010eakujeme e\u0161te raz v\u0161etk\u00fdm z\u00fa\u010dastnen\u00fdm.<\/span><\/span><\/span>Klub CF<\/h1>\n

 <\/p>\n

\"\"<\/p>\n

Cel\u00fa konferenciu m\u00f4\u017eete vidie\u0165 tu video za\u010d\u00edna od 30 minuty<\/p>\n

https:\/\/www.youtube.com\/watch?v=bRI79F-xaVU<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

7.apr\u00edla sa pod z\u00e1\u0161titou Kliniky detskej pneumol\u00f3gie a ftize\u00f3l\u00f3gie LFSZU, N\u00e1rodn\u00e9ho centra detsk\u00fdch chor\u00f4b Bratislava a Klubu cystickej fibr\u00f3zy sa uskuto\u010dnila konferencia pod n\u00e1zvom Novinky v starostlivosti a lie\u010dbe cystickej fibr\u00f3zy.   Pred rodi\u010dov, odborn\u00edkov a z\u00e1ujemcov o problematiku cystickej fibr\u00f3zy sa postavili 6 odborn\u00edci, aby v kvalitn\u00fdch predn\u00e1\u0161kach predostreli aktu\u00e1lne inform\u00e1cie k danej problematike. […]<\/p>\n","protected":false},"author":1,"featured_media":1100,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-1098","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-klub-cf"],"yoast_head":"\nV Bratislave sa uskuto\u010dnila konferencia o Cystickej fibr\u00f3ze. - 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\/2018\/04\/12\/v-bratislave-sa-uskutocnila-konferencia-o-cystickej-fibroze\/\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"V Bratislave sa uskuto\u010dnila konferencia o Cystickej fibr\u00f3ze. - klubcf.sk\" \/>\n<meta property=\"og:description\" content=\"7.apr\u00edla sa pod z\u00e1\u0161titou Kliniky detskej pneumol\u00f3gie a ftize\u00f3l\u00f3gie LFSZU, N\u00e1rodn\u00e9ho centra detsk\u00fdch chor\u00f4b Bratislava a Klubu cystickej fibr\u00f3zy sa uskuto\u010dnila konferencia pod n\u00e1zvom Novinky v starostlivosti a lie\u010dbe cystickej fibr\u00f3zy.   Pred rodi\u010dov, odborn\u00edkov a z\u00e1ujemcov o problematiku cystickej fibr\u00f3zy sa postavili 6 odborn\u00edci, aby v kvalitn\u00fdch predn\u00e1\u0161kach predostreli aktu\u00e1lne inform\u00e1cie k danej problematike. 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