{"id":2444,"date":"2021-09-02T23:48:34","date_gmt":"2021-09-02T21:48:34","guid":{"rendered":"https:\/\/www.cisztasfibrozis.hu\/?p=2444"},"modified":"2021-09-29T19:13:19","modified_gmt":"2021-09-29T17:13:19","slug":"cfnagyokos2021","status":"publish","type":"post","link":"https:\/\/www.cisztasfibrozis.hu\/index.php\/2021\/09\/02\/cfnagyokos2021\/","title":{"rendered":"CF Nagyokos 2 &#8211; tanuljunk egym\u00e1st\u00f3l is!  2021.10.01-03"},"content":{"rendered":"\n<h3 class=\"wp-block-heading\">A CF Betegek Egyes\u00fclete szeretettel megh\u00edv minden kedves \u00e9rdekl\u0151d\u0151t a<br><strong>CF Nagyokos 2 \u2013 tanuljunk egym\u00e1st\u00f3l is!<\/strong>  &#8211; megnevez\u00e9s\u0171, k\u00e9t napos, ismeretterjeszt\u0151 \u00e9s tapasztalat cser\u00e9re lehet\u0151s\u00e9get biztos\u00edt\u00f3 betegeduk\u00e1ci\u00f3s rendezv\u00e9nyre <a href=\"http:\/\/www.vvsisporthotel.hu\/\" target=\"_blank\" rel=\"noopener\">VVSI Sport hotelben<\/a>. A konferencia c\u00e9lja, hogy az orsz\u00e1g t\u00e1voli szegleteiben \u00e9l\u0151 CF-es betegek \u00e9s hozz\u00e1tartoz\u00f3k is, az id\u0151keret \u00e1ltal biztos\u00edtott legsz\u00e9lesebb t\u00e9mav\u00e1laszt\u00e9kot megtal\u00e1lva v\u00e1laszt kaphassanak az \u0151ket legink\u00e1bb \u00e9rdekl\u0151 k\u00e9rd\u00e9sekre szakemberekt\u0151l illetve sz\u00fcl\u0151 \u00e9s betegt\u00e1rsakt\u00f3l is.<\/h3>\n\n\n\n<p class=\"has-white-color has-vivid-red-background-color has-text-color has-background\">A r\u00e9szv\u00e9tel felt\u00e9tele<span class=\"has-inline-color has-luminous-vivid-amber-color\"><strong> a Covid19 elleni v\u00e9d\u0151olt\u00e1s megl\u00e9te, valamint az \u00e9rv\u00e9nyes v\u00e9detts\u00e9gi igazolv\u00e1ny felmutat\u00e1sa!<\/strong><\/span>&nbsp;A maszk haszn\u00e1latot, az aj\u00e1nlott t\u00e1vols\u00e1gtart\u00e1st \u00e9s minden egy\u00e9b biztons\u00e1gi felt\u00e9telt mindenki mag\u00e1ra n\u00e9zve \u00e9rezze k\u00f6telez\u0151nek, illetve minden vend\u00e9g\u00fcnk gondoskodjon mag\u00e1val hozott maszkr\u00f3l \u00e9s k\u00e9zfert\u0151tlen\u00edt\u0151r\u0151l!&nbsp;A rendezv\u00e9nyek megtart\u00e1s\u00e1val kapcsolatos \u00e1ltal\u00e1nos szab\u00e1lyok v\u00e1ltoz\u00e1sa eset\u00e9n a r\u00e9szv\u00e9tel felt\u00e9teleinek megv\u00e1ltoztat\u00e1s\u00e1ra a jogot fenntartjuk, err\u0151l az \u00e9rintetteket email \u00fatj\u00e1n valamint a honlapon tal\u00e1lhat\u00f3 hirdetm\u00e9nyben is t\u00e1j\u00e9koztatjuk!<\/p>\n\n\n\n<p><span class=\"has-inline-color has-vivid-red-color\">A rendezv\u00e9ny kiemelt t\u00e9m\u00e1ja a CFTR modul\u00e1tor gy\u00f3gyszerek (Orkambi, Kaftrio) hazai bevezet\u00e9s\u00e9nek k\u00f6r\u00fclm\u00e9nyei, alkalmaz\u00e1sa, illetve a CFTR modul\u00e1tor ter\u00e1pi\u00e1kkal kapcsolatos tapasztalatok!<\/span><br><br>A <a href=\"https:\/\/teams.microsoft.com\/l\/meetup-join\/19%3ameeting_NTJhNTk3MDMtMWUyOC00Y2Q3LWIwMTctNTVhZjU3NTEzMmZl%40thread.v2\/0?context=%7b%22Tid%22%3a%22e2d54470-92aa-44ab-9fb7-6a23a53384c4%22%2c%22Oid%22%3a%22af97e794-36f6-487b-81f4-b6cd4f1ecf93%22%7d\" target=\"_blank\" rel=\"noreferrer noopener\">rendezv\u00e9ny \u00e9l\u0151 k\u00f6zvet\u00edt\u00e9se<\/a> a Microsoft <a href=\"https:\/\/www.microsoft.com\/hu-hu\/microsoft-teams\/download-app\" target=\"_blank\" rel=\"noopener\">Teams<\/a> applik\u00e1ci\u00f3val (sz\u00e1m\u00edt\u00f3g\u00e9pen, mobiltelefonon vagy b\u00f6ng\u00e9sz\u0151b\u0151l) az al\u00e1bbi linkr\u0151l el\u00e9rhet\u0151, szombat reggel 08:55-t\u0151l!<\/p>\n\n\n\n<p><strong>A k\u00e9t napos konferenci\u00e1n sz\u00e1m\u00edtunk:<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>fiatal kisgyermekes sz\u00fcl\u0151kre, akik csak most ismerkednek a betegs\u00e9ggel<\/li><li>tapasztaltabbakra, akik seg\u00edten\u00e9nek megosztani a rendelkez\u00e9s\u00fckre \u00e1ll\u00f3 tud\u00e1st \u00e9s tapasztalatot<\/li><li>betegekre, akik t\u00e1j\u00e9koz\u00f3dn\u00e1nak a legfrissebb ter\u00e1pi\u00e1s lehet\u0151s\u00e9gekr\u0151l<\/li><li>transzplant\u00e1ltakra illetve azokra, akik m\u00e9g csak el\u0151tte \u00e1llnak<\/li><\/ul>\n\n\n\n<p><strong>A rendezv\u00e9ny d\u00edjmentes, de regisztr\u00e1ci\u00f3hoz k\u00f6t\u00f6tt! <\/strong>K\u00e9rj\u00fck, hogy az el\u0151ad\u00f3terem limit\u00e1lt befogad\u00f3k\u00e9pess\u00e9ge miatt, azok is regisztr\u00e1ljanak akik nem k\u00e9rnek sz\u00e1ll\u00e1st! A jelentkez\u00e9shez k\u00e9rj\u00fck az <a href=\"https:\/\/forms.office.com\/r\/ssMpcZxyRN\" target=\"_blank\" rel=\"noopener\">al\u00e1bbi \u0171rlap<\/a> kit\u00f6lt\u00e9s\u00e9t!<\/p>\n\n\n\n<p><strong>A konferencia id\u0151pontja<\/strong>: 2021.10.01 \u2013 03 (p\u00e9ntek este vacsora, szombat reggeli-eb\u00e9d-vacsora, vas\u00e1rnap reggeli)<br><br><strong>Jelentkez\u00e9si hat\u00e1rid\u0151<\/strong>: 2021. szeptember 20. 23:59<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Konferencia&nbsp;program:<\/strong><\/h2>\n\n\n\n<p><strong><span style=\"color: #ff0000;\"><span class=\"has-inline-color has-vivid-red-color\">2021. okt\u00f3ber 1, p\u00e9ntek:<\/span><\/span><\/strong><\/p>\n\n\n\n<p>17:00-t\u00f3l: \u00c9rkez\u00e9s, regisztr\u00e1ci\u00f3<br>18:00-19:00: Vacsora<br>20:00-t\u00f3l:&nbsp;<span style=\"font-weight: 400;\">Ismerked\u00e9si est, k\u00f6z\u00f6ss\u00e9gi program <\/span><\/p>\n\n\n\n<p><strong><span class=\"has-inline-color has-vivid-red-color\">2021. okt\u00f3ber 2, szombat:<\/span><\/strong><\/p>\n\n\n\n<p><span style=\"color: #0000ff;\"><span class=\"has-inline-color has-vivid-cyan-blue-color\">09:00 &#8211; 09:25&nbsp; &nbsp; &nbsp;Megnyit\u00f3 &#8211; A CF Ell\u00e1t\u00e1s Magyarorsz\u00e1gon (Prof. Dr. Horv\u00e1th Ildik\u00f3 <em>Eg\u00e9szs\u00e9g\u00fcgy\u00e9rt Felel\u0151s \u00c1llamtitk\u00e1r<\/em>)<\/span><\/span><strong><span class=\"has-inline-color has-vivid-cyan-blue-color\">&nbsp;<\/span><\/strong><\/p>\n\n\n\n<p>09:25 &#8211; 09:50&nbsp; &nbsp;  T\u00fcd\u0151transzplant\u00e1ci\u00f3 Magyarorsz\u00e1gon (Dr. R\u00e9nyi-V\u00e1mos Ferenc Ph.D., Dr. Elek Jen\u0151)<br>09:50 &#8211; 10:00&nbsp; &nbsp; &nbsp;K\u00e9rd\u00e9sek \u00e9s v\u00e1laszok az elhangzotakkal kapcsolatban<\/p>\n\n\n\n<p>10:00 &#8211; 10:20&nbsp; &nbsp;  <span style=\"font-weight: 400;\">A ciszt\u00e1s fibr\u00f3zis f\u00fcl- orr- g\u00e9g\u00e9szeti k\u00e9rd\u00e9sei<\/span> (Dr. Helfferich Frigyes PhD) <span style=\"font-weight: 400;\"><br>10:20 &#8211; 10:30&nbsp; &nbsp; &nbsp;K\u00e9rd\u00e9sek \u00e9s v\u00e1laszok az elhangzottakkal kapcsolatban<\/span><\/p>\n\n\n\n<p>10:30 &#8211; 10:45&nbsp; &nbsp; &nbsp;V\u00e9d\u0151h\u00e1l\u00f3val a mindennapokban &#8211; szoci\u00e1lis ell\u00e1t\u00e1sokr\u00f3l \u00f6sszefoglal\u00f3an (Horv\u00e1th L\u00edvia)<\/p>\n\n\n\n<p><span style=\"color: #0000ff;\"><span class=\"has-inline-color has-vivid-cyan-blue-color\">10:45 &#8211; 11:15&nbsp; &nbsp; &nbsp;K\u00e1v\u00e9sz\u00fcnet<\/span><\/span><\/p>\n\n\n\n<p><span style=\"color: #000000;\">11:15 &#8211; 11:30&nbsp; &nbsp; &nbsp;Sport \u00e9s t\u00e1pl\u00e1lkoz\u00e1s: hogyan tal\u00e1ljuk meg az egyens\u00falyt?&nbsp; &nbsp;(T\u00f3th Krisztina)<br>11:30 &#8211; 11:40&nbsp; &nbsp; &nbsp;<span style=\"font-weight: 400;\">K\u00e9rd\u00e9sek \u00e9s v\u00e1laszok az elhangzottakkal kapcsolatban<\/span><\/span><\/p>\n\n\n\n<p>11:40 &#8211; 12:20&nbsp; &nbsp; &nbsp;A t\u00f6bbfunkci\u00f3s fizikai aktivit\u00e1s (Dr. Borka P\u00e9ter, Petr\u00f3 Judit)&nbsp;<br>12:20 &#8211; 12:40&nbsp; &nbsp; &nbsp;<span style=\"font-weight: 400;\">Sport \u00e9s CF &#8211; besz\u00e9lget\u00e9s CF-es betegekkel a sportr\u00f3l<\/span><br>12:40 &#8211; 13:00     SIMEOX Physio Assist &#8211; PARI Inhal\u00e1torok ( Wochna Marek &#8211; EO Kft.)<\/p>\n\n\n\n<p><span style=\"color: #0000ff;\"><span class=\"has-inline-color has-vivid-cyan-blue-color\">13:00 &#8211; 14:30&nbsp; &nbsp; Eb\u00e9d<\/span><\/span><\/p>\n\n\n\n<p>14:30 &#8211; 14:50&nbsp; &nbsp; A k\u00f6z\u00f6ss\u00e9g ereje (Marsal G\u00e9za)<br>14:50 &#8211; 15:00    K\u00e9rd\u00e9sek \u00e9s v\u00e1laszok az elhangzottakkal kapcsolatban<\/p>\n\n\n\n<p>15:00 &#8211; 15:20&nbsp; &nbsp; A k\u00f6z\u00f6ss\u00e9gbe j\u00e1r\u00e1s kih\u00edv\u00e1sai ciszt\u00e1s fibr\u00f3zisban&nbsp; (Dr. P\u00e1rniczky Andrea PhD)<br>15:20 &#8211; 15:30&nbsp; &nbsp; K\u00e9rd\u00e9sek \u00e9s v\u00e1laszok az elhangzottakkal kapcsolatban<\/p>\n\n\n\n<p><span class=\"has-inline-color has-vivid-cyan-blue-color\">15:30 &#8211; 16:00&nbsp; &nbsp; K\u00e1v\u00e9sz\u00fcnet<\/span><\/p>\n\n\n\n<p>16:00 &#8211; 16:20&nbsp; &nbsp;  CF genetika az \u00fajsz\u00fcl\u00f6ttkori sz\u0171r\u00e9s \u00e9s a mut\u00e1ci\u00f3-specifikus ter\u00e1pi\u00e1k szempontj\u00e1b\u00f3l (Dr.     Balogh Istv\u00e1n PhD)<br>16:20 &#8211; 16:40&nbsp; &nbsp; &nbsp;Ki kaphat Orkambit \u00e9s hogyan? (Dr. Hal\u00e1sz Adrien PhD)<br>16:40 &#8211; 17:00      Modul\u00e1tor ter\u00e1pia:  M\u00falt. Jelen! J\u00f6v\u0151? (Dr. Laki Istv\u00e1n)<br>17:00 &#8211; 17:20      CFTR Tapasztalatok (Dr. P\u00e1rniczky Andrea PhD)<br>17:20 &#8211; 18:00      K\u00e9rd\u00e9sek \u00e9s v\u00e1laszok az elhangzottakkal kapcsolatban<\/p>\n\n\n\n<p><span style=\"color: #0000ff;\"><span class=\"has-inline-color has-vivid-cyan-blue-color\">18:00 &#8211; 19:00&nbsp; &nbsp; Vacsora<\/span><\/span><\/p>\n\n\n\n<p>20:00-t\u00f3l k\u00f6z\u00f6ss\u00e9gi program, k\u00f6tetlen besz\u00e9lget\u00e9sek<\/p>\n\n\n\n<p><span class=\"has-inline-color has-vivid-red-color\"><strong>2021. okt\u00f3ber 3, vas\u00e1rnap:<\/strong><\/span><\/p>\n\n\n\n<p>10:00 &#8211; 12:00&nbsp; &nbsp;&nbsp;<b>Fizioter\u00e1pia<\/b><span style=\"font-weight: 400;\"> workshop&nbsp; (Petr\u00f3 Judit, Dr. Borka P\u00e9ter)<br><\/span><span style=\"font-weight: 400;\">&nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; besz\u00e9lget\u00e9sek az el\u0151ad\u00e1sok k\u00f6zben felmer\u00fclt k\u00e9rd\u00e9sekr\u0151l<\/span><\/p>\n\n\n\n<p>10:00 &#8211; 12:00&nbsp; &nbsp; <span style=\"font-weight: 400;\"><b>T\u00e1pl\u00e1lkoz\u00e1s, dietetika workshop<\/b>&nbsp; (T\u00f3th Krisztina)<br>&nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; besz\u00e9lget\u00e9sek az el\u0151ad\u00e1sok k\u00f6zben felmer\u00fclt k\u00e9rd\u00e9sekr\u0151l<\/span><\/p>\n\n\n\n<p>10:00 &#8211; 12:00&nbsp; &nbsp; <b>Genetika workshop&nbsp;&nbsp;<\/b>(Dr. Balogh Istv\u00e1n)<br>&nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; besz\u00e9lget\u00e9sek az el\u0151ad\u00e1sok k\u00f6zben felmer\u00fclt k\u00e9rd\u00e9sekr\u0151l<\/p>\n\n\n\n<p>10:00 &#8211; 12:00&nbsp; &nbsp; <strong>Orvosi workshop&nbsp;&nbsp;<\/strong>(Dr. Hal\u00e1sz Adrien)<br>&nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; besz\u00e9lget\u00e9sek az el\u0151ad\u00e1sok k\u00f6zben felmer\u00fclt k\u00e9rd\u00e9sekr\u0151l<\/p>\n\n\n\n<p><span style=\"color: #000000;\"><span data-sheets-value=\"{&quot;1&quot;:2,&quot;2&quot;:&quot;Fizioter\u00e1pia piciknek \u00e9s kicsiknek&quot;}\" data-sheets-userformat=\"{&quot;2&quot;:15235,&quot;3&quot;:{&quot;1&quot;:0},&quot;4&quot;:[null,2,-1],&quot;10&quot;:0,&quot;11&quot;:0,&quot;12&quot;:0,&quot;14&quot;:[null,2,0],&quot;15&quot;:&quot;Calibri, sans-serif&quot;,&quot;16&quot;:11}\"><span style=\"color: #0000ff;\">12:00 &#8211; 13:00&nbsp; &nbsp; B\u00fcf\u00e9 eb\u00e9d, rendezv\u00e9ny z\u00e1r\u00e1sa<\/span><\/span><\/span><\/p>\n\n\n\n<p><\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-large is-resized\"><a href=\"https:\/\/forms.office.com\/r\/ssMpcZxyRN\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/www.cisztasfibrozis.hu\/wp-content\/uploads\/2021\/05\/CF-Nagyokos-2-Made-with-PosterMyWall-1.jpg\" alt=\"\" class=\"wp-image-2447\" width=\"574\" height=\"837\" srcset=\"https:\/\/www.cisztasfibrozis.hu\/wp-content\/uploads\/2021\/05\/CF-Nagyokos-2-Made-with-PosterMyWall-1.jpg 600w, https:\/\/www.cisztasfibrozis.hu\/wp-content\/uploads\/2021\/05\/CF-Nagyokos-2-Made-with-PosterMyWall-1-205x300.jpg 205w\" sizes=\"auto, (max-width: 574px) 100vw, 574px\" \/><\/a><\/figure><\/div>\n","protected":false},"excerpt":{"rendered":"<p>A CF Betegek Egyes\u00fclete szeretettel megh\u00edv minden kedves \u00e9rdekl\u0151d\u0151t aCF Nagyokos 2 \u2013 tanuljunk egym\u00e1st\u00f3l is! &#8211; megnevez\u00e9s\u0171, k\u00e9t napos, ismeretterjeszt\u0151 \u00e9s tapasztalat cser\u00e9re lehet\u0151s\u00e9get&#8230;<\/p>\n","protected":false},"author":1,"featured_media":2447,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4],"tags":[180],"class_list":["post-2444","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-esemenyek","tag-cf-nagyokos-2","entry","double"],"_links":{"self":[{"href":"https:\/\/www.cisztasfibrozis.hu\/index.php\/wp-json\/wp\/v2\/posts\/2444","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.cisztasfibrozis.hu\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.cisztasfibrozis.hu\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.cisztasfibrozis.hu\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.cisztasfibrozis.hu\/index.php\/wp-json\/wp\/v2\/comments?post=2444"}],"version-history":[{"count":26,"href":"https:\/\/www.cisztasfibrozis.hu\/index.php\/wp-json\/wp\/v2\/posts\/2444\/revisions"}],"predecessor-version":[{"id":2532,"href":"https:\/\/www.cisztasfibrozis.hu\/index.php\/wp-json\/wp\/v2\/posts\/2444\/revisions\/2532"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.cisztasfibrozis.hu\/index.php\/wp-json\/wp\/v2\/media\/2447"}],"wp:attachment":[{"href":"https:\/\/www.cisztasfibrozis.hu\/index.php\/wp-json\/wp\/v2\/media?parent=2444"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.cisztasfibrozis.hu\/index.php\/wp-json\/wp\/v2\/categories?post=2444"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.cisztasfibrozis.hu\/index.php\/wp-json\/wp\/v2\/tags?post=2444"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}