{"id":6137,"date":"2025-05-06T13:05:44","date_gmt":"2025-05-06T11:05:44","guid":{"rendered":"https:\/\/www.ehc.eu\/uncategorized-hr\/ehc-podrzava-izjavu-isth-a-eahad-a-i-rada-od-kuce-o-kriticnoj-prekretnici-u-lijecenju-hemofilije\/"},"modified":"2026-04-02T16:31:42","modified_gmt":"2026-04-02T14:31:42","slug":"ehc-podrzava-izjavu-isth-a-eahad-a-i-rada-od-kuce-o-kriticnoj-prekretnici-u-lijecenju-hemofilije","status":"publish","type":"post","link":"https:\/\/www.ehc.eu\/hr\/uncategorized-hr\/ehc-podrzava-izjavu-isth-a-eahad-a-i-rada-od-kuce-o-kriticnoj-prekretnici-u-lijecenju-hemofilije\/","title":{"rendered":"EHC podr\u017eava izjavu ISTH-a, EAHAD-a i rada od ku\u0107e o kriti\u010dnoj prekretnici u lije\u010denju hemofilije"},"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%]\">EHC podr\u017eava izjavu ISTH-a, EAHAD-a i rada od ku\u0107e o kriti\u010dnoj prekretnici u lije\u010denju hemofilije<\/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:\/\/www.ehc.eu\/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>EHC se pridru\u017euje <strong><a href=\"https:\/\/www.isth.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">Me\u0111unarodnom dru\u0161tvu za trombozu i hemostazu (ISTH),<\/a><\/strong> <strong><a href=\"https:\/\/www.eahad.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">Europskom udru\u017eenju za hemofiliju i srodne poreme\u0107aje (EAHAD),<\/a><\/strong> <strong><a href=\"https:\/\/wfh.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">Svjetskoj federaciji hemofilije (WFH)<\/a><\/strong> i drugim vode\u0107im me\u0111unarodnim organizacijama u izdavanju izjave i hitnog poziva na nastavak predanosti inovacijama i pristupu u skrbi za hemofiliju.<\/p>\n<p><!-- wp:paragraph --><\/p>\n<p>Tijekom posljednjeg desetlje\u0107a, lije\u010denje hemofilije zna\u010dajno je napredovalo od tradicionalne intravenske zamjene faktora do subkutanih supstitucijskih terapija, rebalansiraju\u0107ih sredstava i genskih terapija. Ove inovacije nude zna\u010dajno pobolj\u0161ane ishode i kvalitetu \u017eivota osobama s hemofilijom, uklju\u010duju\u0107i one s blagim ili umjerenim bolestima, \u017eene i osobe s povezanim poreme\u0107ajima zgru\u0161avanja. <\/p>\n<p><!-- \/wp:paragraph --> <!-- wp:paragraph --><\/p>\n<p>U posljednjim godinama, tri genske terapije \u2014 <em>ROCTAVIAN,<\/em> <em>HEMGENIX<\/em> i <em>BEQVEZ<\/em> \u2014 dobile su regulatorno odobrenje, \u0161to predstavlja povijesnu prekretnicu. Zabrinjavaju\u0107e je da su nekoliko tvrtki nedavno ukinule, zaustavile ili smanjile programe genske terapije, navode\u0107i ograni\u010den interes zajednice i komercijalnu nesigurnost. <\/p>\n<p><!-- \/wp:paragraph --> <!-- wp:paragraph --><\/p>\n<p>Tvrdnje o nezainteresiranosti iz zajednice hemofila su obmanjuju\u0107e i ugro\u017eavaju napredak genske terapije. Trenutna spora primjena zna\u010dajno je povezana s komercijalnim neizvjesnostima, fragmentiranim zdravstvenim sustavima, izazovima u naknadama, neizvjesnostima dugoro\u010dnih ishoda i sustavnim preprekama, a ne nedostatkom interesa i\/ili potrebe. <\/p>\n<p><!-- wp:paragraph --><\/p>\n<p>Vi\u0161e nego ikad, znanstveno-medicinska dru\u0161tva i zajednice pacijenata pozivaju i podr\u017eavaju razvoj sigurnih, u\u010dinkovitih terapija gena i drugih novih terapija hemofilije.<\/p>\n<p><!-- \/wp:paragraph --> <!-- wp:paragraph --><\/p>\n<p><strong>Pozivamo sve dionike \u2014 industriju, regulatore, platitelje, financijere, istra\u017eiva\u010de, klini\u010dare i pacijente \u2014 da:<\/strong><\/p>\n<ul>\n<li>Odr\u017eavati istra\u017eivanja, ulaganja i klini\u010dki razvoj u inovativnim i naprednim terapijama, uklju\u010duju\u0107i genske terapije i terapije bez zamjenskih metoda;<!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li>Optimizirati i pro\u0161iriti pristup postoje\u0107im tretmanima \u0161irom svijeta;<!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li>Smanjiti nepotrebna optere\u0107enja u klini\u010dkom razvoju i procesima odobravanja lijekova<!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li>Razviti jasne, pravedne okvire za naknadu; i<!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li>Oja\u010dati globalnu suradnju, istra\u017eivanje i obrazovanje.<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --> <!-- wp:paragraph --><\/p>\n<p>Budu\u0107nost hemofilije mo\u017ee<!-- \/wp:paragraph -->ponovno ovisiti o zajedni\u010dkom djelovanju. Inovacije i pristup tretmanima moraju ostati prioritet kako bi sve osobe s hemofilijom, bez obzira gdje \u017eivjele, mogle imati koristi od sigurnih, u\u010dinkovitih i \u017eivotno promjenjivih terapija. <\/p>\n<p><em>Osim ISTH-a, EAHAD-a i rada od ku\u0107e, ovu izjavu podr\u017eavaju:<\/em><\/p>\n<ul>\n<li><a href=\"https:\/\/www.asgct.org\/\" target=\"_blank\" rel=\"noopener\">Ameri\u010dko dru\u0161tvo za gensku i stani\u010dnu terapiju (ASGCT)<\/a><!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li><a href=\"https:\/\/www.apsth.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">Azijsko-pacifi\u010dko dru\u0161tvo za trombozu i hemostazu (APSTH)<\/a><!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li><a href=\"https:\/\/www.ahadap.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">Udruga za hemofiliju i srodne poreme\u0107aje &#8211; Azijsko-pacifi\u010dka regija (AHADAP)<\/a><!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li>Europski konzorcij za hemofiliju (EHC)<!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li><a href=\"https:\/\/www.esgct.eu\/\" target=\"_blank\" rel=\"noreferrer noopener\">Europsko dru\u0161tvo za gensku i stani\u010dnu terapiju (ESGCT)<\/a><!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li><a href=\"https:\/\/www.claht.org\/web\/\" target=\"_blank\" rel=\"noreferrer noopener\">Grupo Cooperativo Latinoamericano de Hemostasia y Trombosis (Grupo CLAHT)<\/a><!-- \/wp:list-item --> <!-- wp:list-item --><\/li>\n<li><a href=\"https:\/\/www.bleeding.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">Nacionalna zaklada za poreme\u0107aje krvarenja (NBDF)<\/a><\/li>\n<\/ul>\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\t\t<div class=\"bottom mt-12\" data-scroll data-fade-up>\n\t\t\t\t\t\t\t\t<a href=\"https:\/\/www.isth.org\/news\/699516\/\" target=\"_blank\" class=\"btn with-icon\">\n\t\t\t\t\t\t\t\t\t<span>Read the full statement here<\/span>\n\t\t\t\t\t\t\t\t<\/a>\n\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<\/section>\n","protected":false},"excerpt":{"rendered":"<p>EHC se pridru\u017euje Me\u0111unarodnom dru\u0161tvu za trombozu i hemostazu (ISTH), Europskoj udruzi za hemofiliju i srodne poreme\u0107aje (EAHAD), Svjetskoj federaciji hemofilije (WFH) i drugim vode\u0107im me\u0111unarodnim organizacijama u izdavanju izjave i hitnog poziva na nastavak predanosti inovacijama i pristupu skrbi za hemofiliju.<\/p>\n","protected":false},"author":4,"featured_media":4349,"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":[55],"tags":[196,195,197],"class_list":["post-6137","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized-hr","tag-hemofilija","tag-izjava","tag-pristup-lijecenju-i-skrbi"],"acf":[],"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"https:\/\/www.ehc.eu\/wp-content\/uploads\/2025\/05\/V3-Call-to-Action-on-Hemophilia-Treatments.png","_links":{"self":[{"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/6137","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\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/comments?post=6137"}],"version-history":[{"count":1,"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/6137\/revisions"}],"predecessor-version":[{"id":6140,"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/6137\/revisions\/6140"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/media\/4349"}],"wp:attachment":[{"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/media?parent=6137"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/categories?post=6137"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.ehc.eu\/hr\/wp-json\/wp\/v2\/tags?post=6137"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}