{"id":142206,"date":"2022-11-16T02:06:09","date_gmt":"2022-11-16T02:06:09","guid":{"rendered":"https:\/\/labinsights.com\/acf_article\/penyakit-genetik-langka-dan-odisea-diagnostik-perjalanan-pelaku-rawat\/"},"modified":"2026-01-06T12:06:06","modified_gmt":"2026-01-06T12:06:06","slug":"rare-genetic-disease-and-the-diagnostic-odyssey-a-caregivers-journey","status":"publish","type":"acf_article","link":"https:\/\/labinsights.com\/id\/event-coverage\/red-2022\/rare-genetic-disease-and-the-diagnostic-odyssey-a-caregivers-journey\/","title":{"rendered":"Penyakit genetik langka dan odisea diagnostik: perjalanan pelaku rawat"},"content":{"rendered":"<p class=\"text-align-justify\">Pada Desember 2021, Arihai Greene lahir dengan tanda-tanda sindrom Prader\u2013Willi (PWS), suatu kelainan genetik yang langka dan serius yang mencakup spektrum masalah kognitif, perilaku, dan perkembangan yang kompleks. Dalam sesi ini, ayahnya akan membahas odisea diagnostik, termasuk pengalaman emosional dalam menavigasi sistem layanan kesehatan Singapura dan menghadapi diagnosis PWS. Ia juga akan menyoroti peluang bagi para\u00a0profesional layanan kesehatan untuk meningkatkan pengalaman pasien dalam diagnostik penyakit langka dan perawatan klinis.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Pada Desember 2021, Arihai Greene lahir dengan tanda-tanda sindrom Prader\u2013Willi (PWS), suatu kelainan genetik yang langka dan serius yang mencakup spektrum masalah kognitif, perilaku, dan perkembangan yang kompleks. Dalam sesi ini, ayahnya akan membahas odisea diagnostik, termasuk pengalaman emosional dalam menavigasi sistem layanan kesehatan Singapura dan menghadapi diagnosis PWS. Ia juga akan menyoroti peluang bagi [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":90934,"parent":0,"menu_order":0,"template":"","meta":{"_acf_changed":false,"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":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","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":""},"tags":[12907,13171,12908],"pillarandcategory":[8098,282,296,293,294],"reporter":[12966],"class_list":["post-142206","acf_article","type-acf_article","status-publish","has-post-thumbnail","hentry","tag-penyakit-langka","tag-red-2022","tag-skrining-bayi-baru-lahir","pillarandcategory-red-2022","pillarandcategory-disease-area","pillarandcategory-event-coverage","pillarandcategory-newborn-screening","pillarandcategory-rare-diseases","reporter-will-greene"],"acf":[],"_links":{"self":[{"href":"https:\/\/labinsights.com\/id\/wp-json\/wp\/v2\/acf_article\/142206","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/labinsights.com\/id\/wp-json\/wp\/v2\/acf_article"}],"about":[{"href":"https:\/\/labinsights.com\/id\/wp-json\/wp\/v2\/types\/acf_article"}],"author":[{"embeddable":true,"href":"https:\/\/labinsights.com\/id\/wp-json\/wp\/v2\/users\/1"}],"version-history":[{"count":1,"href":"https:\/\/labinsights.com\/id\/wp-json\/wp\/v2\/acf_article\/142206\/revisions"}],"predecessor-version":[{"id":142638,"href":"https:\/\/labinsights.com\/id\/wp-json\/wp\/v2\/acf_article\/142206\/revisions\/142638"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/labinsights.com\/id\/wp-json\/wp\/v2\/media\/90934"}],"wp:attachment":[{"href":"https:\/\/labinsights.com\/id\/wp-json\/wp\/v2\/media?parent=142206"}],"wp:term":[{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/labinsights.com\/id\/wp-json\/wp\/v2\/tags?post=142206"},{"taxonomy":"pillarandcategory","embeddable":true,"href":"https:\/\/labinsights.com\/id\/wp-json\/wp\/v2\/pillarandcategory?post=142206"},{"taxonomy":"reporter","embeddable":true,"href":"https:\/\/labinsights.com\/id\/wp-json\/wp\/v2\/reporter?post=142206"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}