K\u00e1sler Mikl\u00f3s bejegyz\u00e9s\u00e9ben az olvashat\u00f3: a gerincvel\u0151-eredet\u0171 izomsorvad\u00e1sban (SMA) szenved\u0151 betegek sz\u00e1m\u00e1ra kulcsfontoss\u00e1g\u00fa meg\u00e1llapod\u00e1st k\u00f6t\u00f6tt a Nemzeti Eg\u00e9szs\u00e9gbiztos\u00edt\u00e1si Alapkezel\u0151, \u00edgy m\u00e1r egyedi m\u00e9lt\u00e1nyoss\u00e1g alapj\u00e1n el\u00e9rhet\u0151 a Zolgensma k\u00e9sz\u00edtm\u00e9ny.<\/p>\n
„A rendk\u00edv\u00fcl dr\u00e1ga k\u00e9sz\u00edtm\u00e9ny alkalmaz\u00e1s\u00e1ra kor\u00e1bban szinte kiz\u00e1r\u00f3lag k\u00f6z\u00f6ss\u00e9gi adakoz\u00e1ssal ny\u00edlt lehet\u0151s\u00e9g Magyarorsz\u00e1gon, ilyen m\u00f3don viszont az \u00e9rintett kisgyermekek\u00e9rt form\u00e1l\u00f3dott \u00f6sszefog\u00e1s erej\u00e9t mutat\u00f3, felemel\u0151 \u00e9s meghat\u00f3 t\u00f6rt\u00e9neteket ismerhett\u00fcnk meg az ut\u00f3bbi \u00e9vekben” – fogalmazott a miniszter.<\/p>\n
Hozz\u00e1tette: az \u00faj meg\u00e1llapod\u00e1s \u00e9rtelm\u00e9ben a gerincvel\u0151-eredet\u0171 izomsorvad\u00e1sban szenved\u0151k hamarabb \u00e9s k\u00f6nnyebben juthatnak majd hozz\u00e1 a n\u00e9lk\u00fcl\u00f6zhetetlen kezel\u00e9shez.<\/p>\n
A spin\u00e1lis izomatr\u00f3fia vagy gerincvel\u0151-eredet\u0171 izomsorvad\u00e1s (Spinal Muscular Atrophy, SMA) egy ritka \u00f6r\u00f6kl\u0151d\u0151 betegs\u00e9g, amelyet az SMN1 g\u00e9n hib\u00e1ja okoz, \u00e9s a gerincvel\u0151 mozgat\u00f3 idegsejtjeinek a fokozatos elveszt\u00e9s\u00e9hez vezet.<\/p>","protected":false},"excerpt":{"rendered":"
\u00c1prilist\u00f3l egyedi m\u00e9lt\u00e1nyoss\u00e1g alapj\u00e1n v\u00e1lik el\u00e9rhet\u0151v\u00e9 az SMA-betegek kezel\u00e9s\u00e9re alkalmas g\u00e9nter\u00e1pi\u00e1s gy\u00f3gyszer – k\u00f6z\u00f6lte az emberi er\u0151forr\u00e1sok minisztere p\u00e9nteken a hivatalos Facebook-oldal\u00e1n.<\/p>","protected":false},"author":8,"featured_media":0,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[1],"cikk_cimkek":[117],"content_flags":[349],"content_icons":[],"class_list":["post-13950","post","type-post","status-publish","format-standard","hentry","category-erdmost","cikk_cimkek-egeszsegugy","content_flags-fontos"],"acf":[],"_links":{"self":[{"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/posts\/13950","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/users\/8"}],"replies":[{"embeddable":true,"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/comments?post=13950"}],"version-history":[{"count":0,"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/posts\/13950\/revisions"}],"wp:attachment":[{"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/media?parent=13950"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/categories?post=13950"},{"taxonomy":"cikk_cimkek","embeddable":true,"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/cikk_cimkek?post=13950"},{"taxonomy":"content_flags","embeddable":true,"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/content_flags?post=13950"},{"taxonomy":"content_icons","embeddable":true,"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/content_icons?post=13950"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}