{"id":64280,"date":"2021-07-16T23:00:28","date_gmt":"2021-07-16T20:00:28","guid":{"rendered":"http:\/\/life.karpat.in.ua\/?p=64280"},"modified":"2021-07-16T23:00:35","modified_gmt":"2021-07-16T20:00:35","slug":"a-karpataljai-szarmazasu-annacska-is-megkapta-a-zolgensma-kezelest-magyarorszagon","status":"publish","type":"post","link":"https:\/\/life.karpat.in.ua\/?p=64280&lang=hu","title":{"rendered":"A k\u00e1rp\u00e1taljai sz\u00e1rmaz\u00e1s\u00fa Ann\u00e1cska is megkapta a Zolgensma kezel\u00e9st Magyarorsz\u00e1gon"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">K\u00e1sler Mikl\u00f3s Magyarorsz\u00e1g emberi er\u0151forr\u00e1sok minisztere Facebook-oldal\u00e1n k\u00f6zz\u00e9tett <a href=\"https:\/\/www.facebook.com\/kasler.miklos.hivatalos\/posts\/360015432417932\" target=\"_blank\" rel=\"noreferrer noopener\">bejegyz\u00e9s\u00e9ben<\/a> tudatta, hogy a k\u00e1rp\u00e1taljai sz\u00e1rmaz\u00e1s\u00fa Ann\u00e1cska megkapta a Zolgensma g\u00e9nter\u00e1pi\u00e1s k\u00e9sz\u00edtm\u00e9ny\u00e9t.<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-rich is-provider-facebook wp-block-embed-facebook\"><div class=\"wp-block-embed__wrapper\">\nhttps:\/\/www.facebook.com\/kasler.miklos.hivatalos\/posts\/360015432417932\n<\/div><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">\u201eEgy meghat\u00f3 pillanat r\u00e9szese lehettem, amikor szem\u00e9lyesen tal\u00e1lkoztam Ann\u00e1csk\u00e1val, aki a h\u00e9ten megkapta a Bethesda Gyermekk\u00f3rh\u00e1zban a Zolgensma g\u00e9nter\u00e1pi\u00e1s k\u00e9sz\u00edtm\u00e9ny\u00e9t. Az SMA-beteg kisl\u00e1ny a kezel\u00e9st k\u00f6vet\u0151en ma m\u00e1r haza is t\u00e9rhet\u201d \u2013 \u00edrta az Emberi Er\u0151forr\u00e1sok Miniszt\u00e9rium\u00e1nak minisztere.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Ann\u00e1cska gerinc eredet\u0171 izomsorvad\u00e1sban (SMA, spin\u00e1lis izomatr\u00f3fia) szenved, akinek betegs\u00e9g\u00e9r\u0151l tavaly augusztusban\u00a0<a rel=\"noreferrer noopener\" href=\"http:\/\/life.karpat.in.ua\/?p=26659&amp;lang=hu\" target=\"_blank\">adtunk h\u00edrt<\/a>. Nagy utat j\u00e1rt be az\u00f3ta a csal\u00e1d: ausztriai \u00e9s magyarorsz\u00e1gi kivizsg\u00e1l\u00e1sok, k\u00f6lt\u00f6z\u00e9s, Spinraza-kezel\u00e9sek. A kisl\u00e1ny\u00e9rt \u00f6sszefogott K\u00e1rp\u00e1talja \u00e9s az anyaorsz\u00e1g is.\u00a0<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Magyarorsz\u00e1gon \u00e1prilisban <a href=\"http:\/\/life.karpat.in.ua\/?p=52924&amp;lang=hu\" target=\"_blank\" rel=\"noreferrer noopener\">jelentett\u00e9k be<\/a>, hogy egyedi m\u00e9lt\u00e1nyoss\u00e1gi elb\u00edr\u00e1l\u00e1s alapj\u00e1n az \u00e1llam t\u00e1mogatja a Zolgensma g\u00e9nter\u00e1pia t\u00f6bb mint 700 milli\u00f3 forintos d\u00edj\u00e1t. Ann\u00e1cska \u00e9letkora miatt k\u00e9ts\u00e9ges volt a pozit\u00edv elb\u00edr\u00e1l\u00e1s, de a miniszter j\u00faniusban k\u00f6z\u00f6ss\u00e9gi oldal\u00e1n k\u00f6z\u00f6lte a <a href=\"http:\/\/life.karpat.in.ua\/?p=60526&amp;lang=hu\" target=\"_blank\" rel=\"noreferrer noopener\">nagyszer\u0171 h\u00edrt<\/a>, miszerint a kisl\u00e1ny es\u00e9lyt kap r\u00e1, hogy teljes \u00e9rt\u00e9k\u0171 \u00e9letet \u00e9lhessen.<\/p>\n\n\n\n<p class=\"has-text-align-right wp-block-paragraph\">(<a rel=\"noreferrer noopener\" href=\"https:\/\/www.facebook.com\/kasler.miklos.hivatalos\/posts\/360015432417932\" target=\"_blank\">Facebook<\/a>\/Magyar Nemzet\/Karpat.in.ua)<\/p>\n","protected":false},"excerpt":{"rendered":"<p>K\u00e1sler Mikl\u00f3s Magyarorsz\u00e1g emberi er\u0151forr\u00e1sok minisztere Facebook-oldal\u00e1n k\u00f6zz\u00e9tett bejegyz\u00e9s\u00e9ben tudatta, hogy a k\u00e1rp\u00e1taljai sz\u00e1rmaz\u00e1s\u00fa Ann\u00e1cska megkapta a Zolgensma g\u00e9nter\u00e1pi\u00e1s k\u00e9sz\u00edtm\u00e9ny\u00e9t.<\/p>\n","protected":false},"author":5,"featured_media":64284,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[15,41,49,11,39],"tags":[45029,16956],"class_list":["post-64280","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-a-nap-hirei","category-cikkek","category-hirek","category-kiemelt-tema","category-vilag","tag-kasler-miklos","tag-sma"],"_links":{"self":[{"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/posts\/64280","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/users\/5"}],"replies":[{"embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=64280"}],"version-history":[{"count":0,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/posts\/64280\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/media\/64284"}],"wp:attachment":[{"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=64280"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=64280"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=64280"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}