{"id":1362,"date":"2025-07-09T09:08:00","date_gmt":"2025-07-09T09:08:00","guid":{"rendered":"https:\/\/hifoder.org\/?page_id=1362"},"modified":"2025-07-09T09:09:13","modified_gmt":"2025-07-09T09:09:13","slug":"karsilastigimiz-zorluklar","status":"publish","type":"page","link":"https:\/\/hifoder.org\/en\/dernek-hakkinda\/karsilastigimiz-zorluklar\/","title":{"rendered":"The Challenges We Face"},"content":{"rendered":"<div data-elementor-type=\"wp-page\" data-elementor-id=\"1362\" class=\"elementor elementor-1362\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-24d87b4 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"24d87b4\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column 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menu-item-object-category menu-item-1145\"><a href=\"https:\/\/hifoder.org\/en\/kategori\/haberler\/\" class=\"elementor-item\">News<\/a><\/li>\n<li class=\"menu-item menu-item-type-taxonomy menu-item-object-category menu-item-1146\"><a href=\"https:\/\/hifoder.org\/en\/kategori\/etkinlikler\/\" class=\"elementor-item\">Events<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1147\"><a href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/dernek-tuzugumuz\/\" class=\"elementor-item\">Our Association Charter<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1307\"><a href=\"https:\/\/hifoder.org\/en\/faaliyet-raporlari\/\" class=\"elementor-item\">Activity Reports<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1374\"><a href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/faaliyetlerimiz\/\" class=\"elementor-item\">Our Activities<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1148\"><a href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/biz-kimiz\/\" class=\"elementor-item\">Who Are We?<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1368\"><a href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/karsilastigimiz-zorluklar\/\" class=\"elementor-item\">The Challenges We Face<\/a><\/li>\n<li class=\"menu-item menu-item-type-taxonomy menu-item-object-category menu-item-1149\"><a href=\"https:\/\/hifoder.org\/en\/kategori\/duyurular\/\" class=\"elementor-item\">Announcements<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1199\"><a href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/destek-ol\/\" class=\"elementor-item\">Support Us<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1338\"><a href=\"https:\/\/hifoder.org\/en\/uyelik-formu\/\" class=\"elementor-item\">Membership Form<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1198\"><a href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/yonetim-kurulu\/\" class=\"elementor-item\">Board of Directors<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1213\"><a href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/tedaviye-erisim-destek-talebi\/\" class=\"elementor-item\">Request for Support for Access to Treatment<\/a><\/li>\n<\/ul>\t\t\t<\/nav>\n\t\t\t\t\t\t<nav class=\"elementor-nav-menu--dropdown elementor-nav-menu__container\" aria-hidden=\"true\">\n\t\t\t\t<ul id=\"menu-2-95e21c2\" class=\"elementor-nav-menu sm-vertical\"><li class=\"menu-item menu-item-type-taxonomy menu-item-object-category menu-item-1145\"><a href=\"https:\/\/hifoder.org\/en\/kategori\/haberler\/\" class=\"elementor-item\" tabindex=\"-1\">News<\/a><\/li>\n<li class=\"menu-item menu-item-type-taxonomy menu-item-object-category menu-item-1146\"><a href=\"https:\/\/hifoder.org\/en\/kategori\/etkinlikler\/\" class=\"elementor-item\" tabindex=\"-1\">Events<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1147\"><a href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/dernek-tuzugumuz\/\" class=\"elementor-item\" tabindex=\"-1\">Our Association Charter<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1307\"><a href=\"https:\/\/hifoder.org\/en\/faaliyet-raporlari\/\" class=\"elementor-item\" tabindex=\"-1\">Activity Reports<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1374\"><a href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/faaliyetlerimiz\/\" class=\"elementor-item\" tabindex=\"-1\">Our Activities<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1148\"><a href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/biz-kimiz\/\" class=\"elementor-item\" tabindex=\"-1\">Who Are We?<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1368\"><a href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/karsilastigimiz-zorluklar\/\" class=\"elementor-item\" tabindex=\"-1\">The Challenges We Face<\/a><\/li>\n<li class=\"menu-item menu-item-type-taxonomy menu-item-object-category menu-item-1149\"><a href=\"https:\/\/hifoder.org\/en\/kategori\/duyurular\/\" class=\"elementor-item\" tabindex=\"-1\">Announcements<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1199\"><a href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/destek-ol\/\" class=\"elementor-item\" tabindex=\"-1\">Support Us<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1338\"><a href=\"https:\/\/hifoder.org\/en\/uyelik-formu\/\" class=\"elementor-item\" tabindex=\"-1\">Membership Form<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1198\"><a href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/yonetim-kurulu\/\" class=\"elementor-item\" tabindex=\"-1\">Board of Directors<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1213\"><a href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/tedaviye-erisim-destek-talebi\/\" class=\"elementor-item\" tabindex=\"-1\">Request for Support for Access to Treatment<\/a><\/li>\n<\/ul>\t\t\t<\/nav>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-5ac561e\" data-id=\"5ac561e\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-8ffdea8 elementor-widget elementor-widget-text-editor\" data-id=\"8ffdea8\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Hifo-DER olarak, nadir kemik hastal\u0131klar\u0131 ile ya\u015fayan bireylerin ve ailelerinin kar\u015f\u0131la\u015ft\u0131\u011f\u0131 ba\u015fl\u0131ca sorunlar\u0131 ele al\u0131yoruz:<\/p><p>Tedaviye Eri\u015fim: HPP tedavisinde kullan\u0131lan Asfotase Alfa (Strensiq) ve XLH tedavisinde kullan\u0131lan Burosumab (Crysvita) gibi ila\u00e7lar SGK geri \u00f6deme listesinde yer alm\u0131yor. Bu durum, ailelerin uzun ve maliyetli hukuki s\u00fcre\u00e7lere girmesine neden oluyor.<\/p><p>Tan\u0131 Gecikmeleri: Yerel hastanelerde uzman eksikli\u011fi ve bilgi yetersizli\u011fi, do\u011fru te\u015fhisin gecikmesine yol a\u00e7\u0131yor.<\/p><p>Evrak ve B\u00fcrokrasi: \u0130la\u00e7 temini i\u00e7in gerekli Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131 raporlar\u0131n\u0131n yenilenmesi s\u00fcre\u00e7lerinde ya\u015fanan aksakl\u0131klar, tedavinin kesintiye u\u011framas\u0131na neden oluyor.<\/p><p>Toplumsal Fark\u0131ndal\u0131k Eksikli\u011fi: Nadir hastal\u0131klar hakk\u0131nda toplumda yeterli bilgi olmamas\u0131, hastalar\u0131n sosyal izolasyon ve akran zorbal\u0131\u011f\u0131 ile kar\u015f\u0131la\u015fmas\u0131na sebep oluyor.<\/p><p>Psikososyal Destek Eksikli\u011fi: Aileler ve \u00e7ocuklar, tedavi s\u00fcre\u00e7lerinin yaratt\u0131\u011f\u0131 duygusal ve maddi y\u00fckle ba\u015fa \u00e7\u0131kmak i\u00e7in yeterli psikolojik destek bulam\u0131yor.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>Hifo-DER olarak, nadir kemik hastal\u0131klar\u0131 ile ya\u015fayan bireylerin ve ailelerinin kar\u015f\u0131la\u015ft\u0131\u011f\u0131 ba\u015fl\u0131ca sorunlar\u0131 ele al\u0131yoruz: Tedaviye Eri\u015fim: HPP tedavisinde kullan\u0131lan Asfotase Alfa (Strensiq) ve XLH tedavisinde kullan\u0131lan Burosumab (Crysvita) gibi ila\u00e7lar SGK geri \u00f6deme listesinde yer alm\u0131yor. Bu durum, ailelerin uzun ve maliyetli hukuki s\u00fcre\u00e7lere girmesine neden oluyor. Tan\u0131 Gecikmeleri: Yerel hastanelerde uzman eksikli\u011fi ve [&hellip;]<\/p>","protected":false},"author":1,"featured_media":0,"parent":56,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"elementor_header_footer","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-1362","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.3.1 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Kar\u015f\u0131la\u015ft\u0131\u011f\u0131m\u0131z Zorluklar - Hifo-DER<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/karsilastigimiz-zorluklar\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Kar\u015f\u0131la\u015ft\u0131\u011f\u0131m\u0131z Zorluklar - Hifo-DER\" \/>\n<meta property=\"og:description\" content=\"Hifo-DER olarak, nadir kemik hastal\u0131klar\u0131 ile ya\u015fayan bireylerin ve ailelerinin kar\u015f\u0131la\u015ft\u0131\u011f\u0131 ba\u015fl\u0131ca sorunlar\u0131 ele al\u0131yoruz: Tedaviye Eri\u015fim: HPP tedavisinde kullan\u0131lan Asfotase Alfa (Strensiq) ve XLH tedavisinde kullan\u0131lan Burosumab (Crysvita) gibi ila\u00e7lar SGK geri \u00f6deme listesinde yer alm\u0131yor. Bu durum, ailelerin uzun ve maliyetli hukuki s\u00fcre\u00e7lere girmesine neden oluyor. Tan\u0131 Gecikmeleri: Yerel hastanelerde uzman eksikli\u011fi ve [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/hifoder.org\/en\/dernek-hakkinda\/karsilastigimiz-zorluklar\/\" \/>\n<meta property=\"og:site_name\" content=\"Hifo-DER\" \/>\n<meta property=\"article:modified_time\" content=\"2025-07-09T09:09:13+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"1 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/hifoder.org\/dernek-hakkinda\/karsilastigimiz-zorluklar\/\",\"url\":\"https:\/\/hifoder.org\/dernek-hakkinda\/karsilastigimiz-zorluklar\/\",\"name\":\"Kar\u015f\u0131la\u015ft\u0131\u011f\u0131m\u0131z Zorluklar - Hifo-DER\",\"isPartOf\":{\"@id\":\"https:\/\/hifoder.org\/#website\"},\"datePublished\":\"2025-07-09T09:08:00+00:00\",\"dateModified\":\"2025-07-09T09:09:13+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/hifoder.org\/dernek-hakkinda\/karsilastigimiz-zorluklar\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/hifoder.org\/dernek-hakkinda\/karsilastigimiz-zorluklar\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/hifoder.org\/dernek-hakkinda\/karsilastigimiz-zorluklar\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Anasayfa\",\"item\":\"https:\/\/hifoder.org\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Dernek Hakk\u0131nda\",\"item\":\"https:\/\/hifoder.org\/dernek-hakkinda\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"Kar\u015f\u0131la\u015ft\u0131\u011f\u0131m\u0131z Zorluklar\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/hifoder.org\/#website\",\"url\":\"https:\/\/hifoder.org\/\",\"name\":\"Hifo-DER\",\"description\":\"\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/hifoder.org\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-US\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Kar\u015f\u0131la\u015ft\u0131\u011f\u0131m\u0131z Zorluklar - Hifo-DER","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/hifoder.org\/en\/dernek-hakkinda\/karsilastigimiz-zorluklar\/","og_locale":"en_US","og_type":"article","og_title":"Kar\u015f\u0131la\u015ft\u0131\u011f\u0131m\u0131z Zorluklar - Hifo-DER","og_description":"Hifo-DER olarak, nadir kemik hastal\u0131klar\u0131 ile ya\u015fayan bireylerin ve ailelerinin kar\u015f\u0131la\u015ft\u0131\u011f\u0131 ba\u015fl\u0131ca sorunlar\u0131 ele al\u0131yoruz: Tedaviye Eri\u015fim: HPP tedavisinde kullan\u0131lan Asfotase Alfa (Strensiq) ve XLH tedavisinde kullan\u0131lan Burosumab (Crysvita) gibi ila\u00e7lar SGK geri \u00f6deme listesinde yer alm\u0131yor. Bu durum, ailelerin uzun ve maliyetli hukuki s\u00fcre\u00e7lere girmesine neden oluyor. 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