{"id":5952,"date":"2024-06-28T13:48:17","date_gmt":"2024-06-28T11:48:17","guid":{"rendered":"https:\/\/www.ehc.eu\/uncategorized-hr\/proslavimo-zajedno-insd-neonatalni-probir-za-rijetke-bolesti-mogao-bi-spasiti-zivote\/"},"modified":"2026-04-02T16:30:41","modified_gmt":"2026-04-02T14:30:41","slug":"proslavimo-zajedno-insd-neonatalni-probir-za-rijetke-bolesti-mogao-bi-spasiti-zivote","status":"publish","type":"post","link":"https:\/\/www.ehc.eu\/hr\/uvidi\/proslavimo-zajedno-insd-neonatalni-probir-za-rijetke-bolesti-mogao-bi-spasiti-zivote\/","title":{"rendered":"Proslavimo zajedno INSD: neonatalni probir za rijetke bolesti mogao bi spasiti \u017eivote"},"content":{"rendered":"<!-- hero -->\t<section   class=\"subpage-hero bg-white\">\n\t\t<div class=\"container\">\n\t\t\t<div class=\"relative z-10\">\n\t\t\t\t<div class=\"pt-16 lg:pt-24 pb-24 lg:pb-32\">\n\t\t\t\t\t<div class=\"row justify-between gap-10 lg:gap-0 mt-10 text-center lg:text-left\">\n\t\t\t\t\t\t<div class=\"w-full lg:w-6\/12 lg:self-center\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"title h2\" data-scroll data-fade-up>\n\t\t\t\t\t\t\t\t\t<p class=\"text-[115%]\">Proslavimo zajedno INSD: neonatalni probir za rijetke bolesti mogao bi spasiti \u017eivote<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<figure class=\"absolute size-[41.8rem] lg:size-[82.8rem] bottom-[-10%] right-[-10rem] lg:right-[-5%] image-contain opacity-100 skip-lazy\" data-parallax>\n\t\t\t\t\t<img decoding=\"async\" loading=\"eager\" src=\"https:\/\/etngbd86n6b.exactdn.com\/wp-content\/themes\/cbd\/img\/content-logo-colorfull-2.svg\" alt=\"content-logo-colorfull\">\n\t\t\t\t<\/figure>\n\t\t\t\t\t\t<\/section>\n<!-- overview -->\t<section   class=\"s-overlay-img s-padding bg-red\">\n\t\t<div class=\"container\">\n\t\t\t<div class=\"row w-full lg:flex-row justify-between text-center lg:text-left gap-14 lg:gap-0 relative z-10\">\n\t\t\t\t\t\t\t\t<div class=\"w-full lg:py-10\">\n\t\t\t\t\t<div class=\"bg-white min-h-full py-12 px-10 lg:py-24 lg:pl-24 xl:pl-44 relative radius-20 z-10\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"content mt-8\" data-scroll data-fade-up>\n\t\t\t\t\t\t\t\t<p>Povodom Me\u0111unarodnog dana neonatalnog skrininga (INSD) 2024., EHC se pridru\u017euje inicijativi Screen4Rare u slavljenju va\u017enosti neonatalnog skrininga za osobe koje \u017eive s izlje\u010divom rijetkom bole\u0161\u0107u.<\/p>\n<p>Dostupni znanstveni dokazi iz svjetskih programa neonatalnog skrininga i pilot-projekata jasno pokazuju da rano asimptomatsko otkrivanje omogu\u0107eno neonatalnim skriningom, kada je povezano s odgovaraju\u0107im lije\u010denjem, mo\u017ee promijeniti \u017eivot pa \u010dak i spasiti \u017eivot. Neonatalno testiranje rijetkih bolesti moglo bi globalno spasiti vi\u0161e od 100.000 novoro\u0111en\u010dadi od smrti ili bolesti koje mijenjaju \u017eivot svake godine. <\/p>\n<p>Nedavno provedeno istra\u017eivanje koje su proveli <strong><a href=\"https:\/\/www.eurordis.org\/rare-barometer\/english\/\" target=\"_blank\" rel=\"noopener\">Rare Barometer<\/a><\/strong> (globalna inicijativa <strong><a href=\"https:\/\/www.eurordis.org\/\" target=\"_blank\" rel=\"noopener\">EURORDIS-a<\/a><\/strong> dostupna na 23 jezika) i Screen4Rare potvrdilo je da je koncept probira novoro\u0111en\u010dadi \u0161iroko prihva\u0107en me\u0111u zajednicom za rijetke bolesti, uzimaju\u0107i u obzir izravna iskustva osoba koje \u017eive s rijetkom bole\u0161\u0107u i njihovih bliskih \u010dlanova obitelji. Rana dijagnoza je klju\u010dna jer omogu\u0107uje obiteljima da planiraju skrb i lije\u010denje svog djeteta. Ovi uvidi vrijedno \u0107e pridonijeti razvoju programa probira novoro\u0111en\u010dadi diljem Europe.  <\/p>\n<p><strong><a href=\"https:\/\/www.eurordis.org\/publications\/rb-nbs-survey-results\/\" target=\"_blank\" rel=\"noopener\">Pogledajte anketu ovdje.<\/a><\/strong><\/p>\n<p>Me\u0111utim, unato\u010d neospornoj va\u017enosti, samo 1 od 3 novoro\u0111en\u010dadi \u0161irom svijeta prolazi bilo kakav oblik probira, dok se mnoge bebe testiraju samo na ograni\u010den broj stanja. Postoji hitna potreba osigurati pravedan i kvalitetan pristup neonatalnom skriningu na globalnoj razini te pomo\u0107i da najbolje prakse postanu uobi\u010dajena praksa. <\/p>\n<p><strong><a href=\"https:\/\/neonatalscreeningday.org\/#celebrate\" target=\"_blank\" rel=\"noopener\">Me\u0111unarodni dan neonatalnog skrininga<\/a><\/strong> je zajedni\u010dki napor <strong>Europskog dru\u0161tva za imunodeficijencije (ESID),<\/strong> <strong>Me\u0111unarodne organizacije pacijenata za primarne imunodeficijencije (IPOPI)<\/strong> i <strong>Me\u0111unarodnog dru\u0161tva za neonatalni probir (ISNS),<\/strong> koji su udru\u017eili snage kroz inicijativu Screen4Rare.<\/p>\n<p>INSD je izvrsna prilika za podizanje svijesti o va\u017enosti neonatalnog skrininga kako bi se ubrzala dijagnoza i lije\u010denje rijetkih bolesti diljem svijeta. Radimo zajedno kako bismo osigurali da svako novoro\u0111en\u010de dobije potrebne preglede za zdrav po\u010detak \u017eivota! <\/p>\n<p><strong><a href=\"https:\/\/www.ehc.eu\/wp-content\/uploads\/Why-does-Newborn-Screening-Matter_INSD-Factsheet.pdf\" target=\"_blank\" rel=\"noopener\">Preuzmite Screen4Rare informativni list o tome za\u0161to je probor novoro\u0111en\u010dadi va\u017ean ovdje.<\/a><\/strong><\/p>\n<p>&nbsp;<\/p>\n<h6><strong>\u0160to je Screen4Rare?<\/strong><\/h6>\n<p>&nbsp;<\/p>\n<p>Screen4Rare je inicijativa s vi\u0161e dionika usmjerena na isticanje va\u017enosti neonatologijskog skrininga novoro\u0111en\u010dadi. Kroz anga\u017eman u politikama, krajnji cilj grupe je osigurati da sve bebe imaju pravi\u010dan pristup novoro\u0111en\u010dadskom pregledu \u2013 alatu koji spa\u0161ava \u017eivote za stanja poput rijetkih bolesti. <\/p>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/section>\n","protected":false},"excerpt":{"rendered":"<p>Povodom Me\u0111unarodnog dana neonatalnog skrininga (INSD) 2024., EHC se pridru\u017euje inicijativi Screen4Rare u slavljenju va\u017enosti neonatalnog skrininga za osobe koje \u017eive s izlje\u010divom rijetkom bole\u0161\u0107u.<\/p>\n","protected":false},"author":2,"featured_media":5953,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[125],"tags":[136],"class_list":["post-5952","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uvidi","tag-kampanja"],"acf":[],"jetpack_featured_media_url":"https:\/\/etngbd86n6b.exactdn.com\/wp-content\/uploads\/2024\/06\/Infog3-e1732024696532.png?strip=all","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/5952","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/comments?post=5952"}],"version-history":[{"count":1,"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/5952\/revisions"}],"predecessor-version":[{"id":5954,"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/5952\/revisions\/5954"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/media\/5953"}],"wp:attachment":[{"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/media?parent=5952"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/categories?post=5952"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/tags?post=5952"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}