{"id":677,"date":"2023-02-28T01:16:38","date_gmt":"2023-02-27T22:16:38","guid":{"rendered":"https:\/\/hifoder.org\/?p=677"},"modified":"2023-02-28T01:16:38","modified_gmt":"2023-02-27T22:16:38","slug":"28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak","status":"publish","type":"post","link":"https:\/\/hifoder.org\/en\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/","title":{"rendered":"28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fcnde \u0130nsan Haklar\u0131 Sorunlar\u0131n\u0131 Anlamak"},"content":{"rendered":"<p>Bug\u00fcn 28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fc. <\/p>\n\n\n\n<p>Daha \u00f6nceki y\u0131llarda dikkat \u00e7ekmeye \u00e7al\u0131\u015ft\u0131\u011f\u0131m\u0131z \u00fczere nadir hastal\u0131klar o kadar da nadir de\u011fil. \u00c7\u00fcnk\u00fc, d\u00fcnya genelinde bilinen yakla\u015f\u0131k 8000 farkl\u0131 nadir hastal\u0131k bulunmakta. <\/p>\n\n\n\n<p>Hipofosfatazya ve Hipofosfatemik Rikets bunlardan sadece ikisi. Biz Hifoder olarak, b\u00f6ylesine spesifik bir alandan yola \u00e7\u0131karak \u00e7e\u015fitli sorunlar\u0131n \u00e7\u00f6z\u00fcm\u00fc noktas\u0131nda \u00e7al\u0131\u015fan bir derne\u011fiz. \u00d6zellikle bebeklik ve \u00e7ocukluk \u00e7a\u011f\u0131nda ortaya \u00e7\u0131kan ve baz\u0131 durumlarda \u00f6l\u00fcmc\u00fcl durumlara sebebiyet veren bu iki hastal\u0131\u011f\u0131n tedavisi i\u00e7in kullan\u0131lan yetim ila\u00e7lar mevcut olmas\u0131na ra\u011fmen bunlara eri\u015fim s\u0131k\u0131nt\u0131s\u0131 ya\u015fayan \u00e7ocuklar\u0131m\u0131z\u0131n sesi olmak ba\u015fl\u0131ca varl\u0131k amac\u0131m\u0131z. <\/p>\n\n\n\n<p>Bunun yan\u0131s\u0131ra, bir\u00e7o\u011fumuzun g\u00fcndelik ya\u015fant\u0131m\u0131zda ismini s\u00f6ylemekte bile zorlanaca\u011f\u0131m\u0131z \u00e7e\u015fitli nadir hastal\u0131kla sava\u015fan bir\u00e7ok insan var, \u00fcstelik \u00e7o\u011funun bilinen iyile\u015ftirici klinik bir tedavisi yok.<\/p>\n\n\n\n<p>Hifoder olarak t\u00fcm bu sorunlar\u0131n fark\u0131ndal\u0131klar\u0131yla hareket ederek <em>Etkiniz AB<\/em>&nbsp;Program\u0131 deste\u011fi ile 2022 y\u0131l\u0131nda Birle\u015fmi\u015f Milletler \u0130nsan Haklar\u0131 Y\u00fcksek Komiserli\u011fi&#8217;nin Nadir Hastal\u0131kla Ya\u015fayan Bireyler, Aileleri ve Bak\u0131mlar\u0131n\u0131 \u00dcstlenenlerin \u0130nsan Haklar\u0131n\u0131n Korunmas\u0131 ile ilgili yapt\u0131\u011f\u0131 \u00e7a\u011fr\u0131 \u00fczerine bilgi notu haz\u0131rlad\u0131k. Haz\u0131rlad\u0131\u011f\u0131m\u0131z bilgi notunun \u0130ngilizce ve T\u00fcrk\u00e7e versiyonlar\u0131n\u0131 a\u015fa\u011f\u0131dan indirebilirsiniz.<\/p>\n\n\n\n<div class=\"wp-block-file\"><a id=\"wp-block-file--media-206a1995-76ec-46ff-b474-4d6bf1e84c62\" href=\"https:\/\/hifoder.org\/wp-content\/uploads\/2023\/03\/Hifo-Der-En-R1-HQ.pdf\">Hifo-Der-En-R1-HQ<\/a><a href=\"https:\/\/hifoder.org\/wp-content\/uploads\/2023\/03\/Hifo-Der-En-R1-HQ.pdf\" class=\"wp-block-file__button\" download aria-describedby=\"wp-block-file--media-206a1995-76ec-46ff-b474-4d6bf1e84c62\">\u0130ndir<\/a><\/div>\n\n\n\n<div class=\"wp-block-file\"><a id=\"wp-block-file--media-61ae2199-a7a7-4b7d-b484-208c7a9df40e\" href=\"https:\/\/hifoder.org\/wp-content\/uploads\/2023\/03\/Hifo-Der-TR-R1-HQ.pdf\">Hifo-Der-TR-R1-HQ<\/a><a href=\"https:\/\/hifoder.org\/wp-content\/uploads\/2023\/03\/Hifo-Der-TR-R1-HQ.pdf\" class=\"wp-block-file__button\" download aria-describedby=\"wp-block-file--media-61ae2199-a7a7-4b7d-b484-208c7a9df40e\">\u0130ndir<\/a><\/div>","protected":false},"excerpt":{"rendered":"<p>Bug\u00fcn 28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fc. Daha \u00f6nceki y\u0131llarda dikkat \u00e7ekmeye \u00e7al\u0131\u015ft\u0131\u011f\u0131m\u0131z \u00fczere nadir hastal\u0131klar o kadar da nadir de\u011fil. \u00c7\u00fcnk\u00fc, d\u00fcnya genelinde bilinen yakla\u015f\u0131k 8000 farkl\u0131 nadir hastal\u0131k bulunmakta. Hipofosfatazya ve Hipofosfatemik Rikets bunlardan sadece ikisi. Biz Hifoder olarak, b\u00f6ylesine spesifik bir alandan yola \u00e7\u0131karak \u00e7e\u015fitli sorunlar\u0131n \u00e7\u00f6z\u00fcm\u00fc noktas\u0131nda \u00e7al\u0131\u015fan bir derne\u011fiz. \u00d6zellikle [&hellip;]<\/p>","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[7,5],"tags":[],"class_list":["post-677","post","type-post","status-publish","format-standard","hentry","category-duyurular","category-haberler"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.3.1 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fcnde \u0130nsan Haklar\u0131 Sorunlar\u0131n\u0131 Anlamak - 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\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fcnde \u0130nsan Haklar\u0131 Sorunlar\u0131n\u0131 Anlamak - Hifo-DER\" \/>\n<meta property=\"og:description\" content=\"Bug\u00fcn 28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fc. Daha \u00f6nceki y\u0131llarda dikkat \u00e7ekmeye \u00e7al\u0131\u015ft\u0131\u011f\u0131m\u0131z \u00fczere nadir hastal\u0131klar o kadar da nadir de\u011fil. \u00c7\u00fcnk\u00fc, d\u00fcnya genelinde bilinen yakla\u015f\u0131k 8000 farkl\u0131 nadir hastal\u0131k bulunmakta. Hipofosfatazya ve Hipofosfatemik Rikets bunlardan sadece ikisi. Biz Hifoder olarak, b\u00f6ylesine spesifik bir alandan yola \u00e7\u0131karak \u00e7e\u015fitli sorunlar\u0131n \u00e7\u00f6z\u00fcm\u00fc noktas\u0131nda \u00e7al\u0131\u015fan bir derne\u011fiz. \u00d6zellikle [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/hifoder.org\/en\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/\" \/>\n<meta property=\"og:site_name\" content=\"Hifo-DER\" \/>\n<meta property=\"article:published_time\" content=\"2023-02-27T22:16:38+00:00\" \/>\n<meta name=\"author\" content=\"admin\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"admin\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"1 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/hifoder.org\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/\",\"url\":\"https:\/\/hifoder.org\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/\",\"name\":\"28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fcnde \u0130nsan Haklar\u0131 Sorunlar\u0131n\u0131 Anlamak - Hifo-DER\",\"isPartOf\":{\"@id\":\"https:\/\/hifoder.org\/#website\"},\"datePublished\":\"2023-02-27T22:16:38+00:00\",\"author\":{\"@id\":\"https:\/\/hifoder.org\/#\/schema\/person\/64fa38481ae7ed8e20760e4aafc9e3b2\"},\"breadcrumb\":{\"@id\":\"https:\/\/hifoder.org\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/hifoder.org\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/hifoder.org\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Anasayfa\",\"item\":\"https:\/\/hifoder.org\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Duyurular\",\"item\":\"https:\/\/hifoder.org\/kategori\/duyurular\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fcnde \u0130nsan Haklar\u0131 Sorunlar\u0131n\u0131 Anlamak\"}]},{\"@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\"},{\"@type\":\"Person\",\"@id\":\"https:\/\/hifoder.org\/#\/schema\/person\/64fa38481ae7ed8e20760e4aafc9e3b2\",\"name\":\"admin\",\"sameAs\":[\"https:\/\/hifoder.org\"]}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fcnde \u0130nsan Haklar\u0131 Sorunlar\u0131n\u0131 Anlamak - 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\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/","og_locale":"en_US","og_type":"article","og_title":"28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fcnde \u0130nsan Haklar\u0131 Sorunlar\u0131n\u0131 Anlamak - Hifo-DER","og_description":"Bug\u00fcn 28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fc. Daha \u00f6nceki y\u0131llarda dikkat \u00e7ekmeye \u00e7al\u0131\u015ft\u0131\u011f\u0131m\u0131z \u00fczere nadir hastal\u0131klar o kadar da nadir de\u011fil. \u00c7\u00fcnk\u00fc, d\u00fcnya genelinde bilinen yakla\u015f\u0131k 8000 farkl\u0131 nadir hastal\u0131k bulunmakta. Hipofosfatazya ve Hipofosfatemik Rikets bunlardan sadece ikisi. Biz Hifoder olarak, b\u00f6ylesine spesifik bir alandan yola \u00e7\u0131karak \u00e7e\u015fitli sorunlar\u0131n \u00e7\u00f6z\u00fcm\u00fc noktas\u0131nda \u00e7al\u0131\u015fan bir derne\u011fiz. \u00d6zellikle [&hellip;]","og_url":"https:\/\/hifoder.org\/en\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/","og_site_name":"Hifo-DER","article_published_time":"2023-02-27T22:16:38+00:00","author":"admin","twitter_card":"summary_large_image","twitter_misc":{"Written by":"admin","Est. reading time":"1 minute"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/hifoder.org\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/","url":"https:\/\/hifoder.org\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/","name":"28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fcnde \u0130nsan Haklar\u0131 Sorunlar\u0131n\u0131 Anlamak - Hifo-DER","isPartOf":{"@id":"https:\/\/hifoder.org\/#website"},"datePublished":"2023-02-27T22:16:38+00:00","author":{"@id":"https:\/\/hifoder.org\/#\/schema\/person\/64fa38481ae7ed8e20760e4aafc9e3b2"},"breadcrumb":{"@id":"https:\/\/hifoder.org\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/hifoder.org\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/hifoder.org\/28-subat-dunya-nadir-hastaliklar-gununde-insan-haklari-sorunlarini-anlamak\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Anasayfa","item":"https:\/\/hifoder.org\/"},{"@type":"ListItem","position":2,"name":"Duyurular","item":"https:\/\/hifoder.org\/kategori\/duyurular\/"},{"@type":"ListItem","position":3,"name":"28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fcnde \u0130nsan Haklar\u0131 Sorunlar\u0131n\u0131 Anlamak"}]},{"@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"},{"@type":"Person","@id":"https:\/\/hifoder.org\/#\/schema\/person\/64fa38481ae7ed8e20760e4aafc9e3b2","name":"admin","sameAs":["https:\/\/hifoder.org"]}]}},"_links":{"self":[{"href":"https:\/\/hifoder.org\/en\/wp-json\/wp\/v2\/posts\/677","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/hifoder.org\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/hifoder.org\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/hifoder.org\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/hifoder.org\/en\/wp-json\/wp\/v2\/comments?post=677"}],"version-history":[{"count":0,"href":"https:\/\/hifoder.org\/en\/wp-json\/wp\/v2\/posts\/677\/revisions"}],"wp:attachment":[{"href":"https:\/\/hifoder.org\/en\/wp-json\/wp\/v2\/media?parent=677"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/hifoder.org\/en\/wp-json\/wp\/v2\/categories?post=677"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/hifoder.org\/en\/wp-json\/wp\/v2\/tags?post=677"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}