{"id":1612,"date":"2018-10-02T20:16:56","date_gmt":"2018-10-02T12:16:56","guid":{"rendered":"https:\/\/rarediseasemalaysia.com\/cabaran-dan-pengesyoran\/pengesyoran\/"},"modified":"2022-12-21T16:42:56","modified_gmt":"2022-12-21T08:42:56","slug":"pengesyoran","status":"publish","type":"page","link":"https:\/\/rarediseasemalaysia.com\/ms\/cabaran-dan-pengesyoran\/pengesyoran\/","title":{"rendered":"Pengesyoran"},"content":{"rendered":"<style>#kt-layout-id_2fe898-1f > .kt-row-column-wrap{align-content:start;}:where(#kt-layout-id_2fe898-1f > .kt-row-column-wrap) > .wp-block-kadence-column{justify-content:start;}#kt-layout-id_2fe898-1f > .kt-row-column-wrap{column-gap:var(--global-kb-gap-md, 2rem);row-gap:var(--global-kb-gap-md, 2rem);padding-top:var( --global-kb-row-default-top, 25px );padding-bottom:var( --global-kb-row-default-bottom, 25px );padding-top:8rem;padding-bottom:8rem;grid-template-columns:minmax(0, 1fr);}#kt-layout-id_2fe898-1f > .kt-row-layout-overlay{opacity:0.30;}@media all and (max-width: 1024px){#kt-layout-id_2fe898-1f > .kt-row-column-wrap{grid-template-columns:minmax(0, 1fr);}}@media all and (max-width: 767px){#kt-layout-id_2fe898-1f > .kt-row-column-wrap{grid-template-columns:minmax(0, 1fr);}}<\/style>\n<div class=\"wp-block-kadence-rowlayout alignnone\"><div id=\"kt-layout-id_2fe898-1f\" class=\"kt-row-layout-inner kt-layout-id_2fe898-1f\"><div class=\"kt-row-column-wrap kt-has-1-columns kt-gutter-default kt-v-gutter-default kt-row-valign-top kt-row-layout-equal kt-tab-layout-inherit kt-m-colapse-left-to-right kt-mobile-layout-row\"><style>.kadence-column_1a87b0-14 > .kt-inside-inner-col{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_1a87b0-14 > .kt-inside-inner-col,.kadence-column_1a87b0-14 > .kt-inside-inner-col:before{border-top-left-radius:0px;border-top-right-radius:0px;border-bottom-right-radius:0px;border-bottom-left-radius:0px;}.kadence-column_1a87b0-14 > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_1a87b0-14 > .kt-inside-inner-col{flex-direction:column;}.kadence-column_1a87b0-14 > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_1a87b0-14 > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_1a87b0-14{position:relative;}@media all and (max-width: 1024px){.kadence-column_1a87b0-14 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_1a87b0-14 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-1 kadence-column_1a87b0-14\"><div class=\"kt-inside-inner-col\"><style>.kt-accordion-id_e73f70-5b .kt-accordion-inner-wrap{column-gap:var(--global-kb-gap-md, 2rem);row-gap:4px;}.kt-accordion-id_e73f70-5b .kt-accordion-panel-inner{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;padding-top:var(--global-kb-spacing-sm, 1.5rem);padding-right:var(--global-kb-spacing-sm, 1.5rem);padding-bottom:var(--global-kb-spacing-sm, 1.5rem);padding-left:var(--global-kb-spacing-sm, 1.5rem);}.kt-accordion-id_e73f70-5b > .kt-accordion-inner-wrap > .wp-block-kadence-pane > .kt-accordion-header-wrap > .kt-blocks-accordion-header{border-top-color:var(--global-palette3, #1A202C);border-right-color:var(--global-palette3, #1A202C);border-bottom-color:var(--global-palette3, #1A202C);border-left-color:var(--global-palette3, #1A202C);border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;border-top-left-radius:0px;border-top-right-radius:0px;border-bottom-right-radius:0px;border-bottom-left-radius:0px;background:var(--global-palette8, #F7FAFC);font-size:21px;line-height:24px;font-weight:bold;color:var(--global-palette3, #1A202C);padding-top:16px;padding-right:16px;padding-bottom:16px;padding-left:16px;}.kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basiccircle ):not( .kt-accodion-icon-style-xclosecircle ):not( .kt-accodion-icon-style-arrowcircle )  > .kt-accordion-inner-wrap > .wp-block-kadence-pane > .kt-accordion-header-wrap .kt-blocks-accordion-icon-trigger:after, .kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basiccircle ):not( .kt-accodion-icon-style-xclosecircle ):not( .kt-accodion-icon-style-arrowcircle )  > .kt-accordion-inner-wrap > .wp-block-kadence-pane > .kt-accordion-header-wrap .kt-blocks-accordion-icon-trigger:before{background:var(--global-palette3, #1A202C);}.kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basic ):not( .kt-accodion-icon-style-xclose ):not( .kt-accodion-icon-style-arrow ) .kt-blocks-accordion-icon-trigger{background:var(--global-palette3, #1A202C);}.kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basic ):not( .kt-accodion-icon-style-xclose ):not( .kt-accodion-icon-style-arrow ) .kt-blocks-accordion-icon-trigger:after, .kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basic ):not( .kt-accodion-icon-style-xclose ):not( .kt-accodion-icon-style-arrow ) .kt-blocks-accordion-icon-trigger:before{background:var(--global-palette8, #F7FAFC);}.kt-accordion-id_e73f70-5b > .kt-accordion-inner-wrap > .wp-block-kadence-pane > .kt-accordion-header-wrap > .kt-blocks-accordion-header:hover, \n\t\t\t\tbody:not(.hide-focus-outline) .kt-accordion-id_e73f70-5b .kt-blocks-accordion-header:focus-visible{color:var(--global-palette1, #3182CE);background:var(--global-palette7, #EDF2F7);border-top-color:var(--global-palette7, #EDF2F7);border-right-color:var(--global-palette7, #EDF2F7);border-bottom-color:var(--global-palette7, #EDF2F7);border-left-color:var(--global-palette7, #EDF2F7);}.kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basiccircle ):not( .kt-accodion-icon-style-xclosecircle ):not( .kt-accodion-icon-style-arrowcircle ) .kt-accordion-header-wrap .kt-blocks-accordion-header:hover .kt-blocks-accordion-icon-trigger:after, .kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basiccircle ):not( .kt-accodion-icon-style-xclosecircle ):not( .kt-accodion-icon-style-arrowcircle ) .kt-accordion-header-wrap .kt-blocks-accordion-header:hover .kt-blocks-accordion-icon-trigger:before, body:not(.hide-focus-outline) .kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basiccircle ):not( .kt-accodion-icon-style-xclosecircle ):not( .kt-accodion-icon-style-arrowcircle ) .kt-blocks-accordion--visible .kt-blocks-accordion-icon-trigger:after, body:not(.hide-focus-outline) .kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basiccircle ):not( .kt-accodion-icon-style-xclosecircle ):not( .kt-accodion-icon-style-arrowcircle ) .kt-blocks-accordion-header:focus-visible .kt-blocks-accordion-icon-trigger:before{background:var(--global-palette1, #3182CE);}.kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basic ):not( .kt-accodion-icon-style-xclose ):not( .kt-accodion-icon-style-arrow ) .kt-accordion-header-wrap .kt-blocks-accordion-header:hover .kt-blocks-accordion-icon-trigger, body:not(.hide-focus-outline) .kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basic ):not( .kt-accodion-icon-style-xclose ):not( .kt-accodion-icon-style-arrow ) .kt-accordion-header-wrap .kt-blocks-accordion-header:focus-visible .kt-blocks-accordion-icon-trigger{background:var(--global-palette1, #3182CE);}.kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basic ):not( .kt-accodion-icon-style-xclose ):not( .kt-accodion-icon-style-arrow ) .kt-accordion-header-wrap .kt-blocks-accordion-header:hover .kt-blocks-accordion-icon-trigger:after, .kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basic ):not( .kt-accodion-icon-style-xclose ):not( .kt-accodion-icon-style-arrow ) .kt-accordion-header-wrap .kt-blocks-accordion-header:hover .kt-blocks-accordion-icon-trigger:before, body:not(.hide-focus-outline) .kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basic ):not( .kt-accodion-icon-style-xclose ):not( .kt-accodion-icon-style-arrow ) .kt-accordion-header-wrap .kt-blocks-accordion-header:focus-visible .kt-blocks-accordion-icon-trigger:after, body:not(.hide-focus-outline) .kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basic ):not( .kt-accodion-icon-style-xclose ):not( .kt-accodion-icon-style-arrow ) .kt-accordion-header-wrap .kt-blocks-accordion-header:focus-visible .kt-blocks-accordion-icon-trigger:before{background:var(--global-palette7, #EDF2F7);}.kt-accordion-id_e73f70-5b .kt-accordion-header-wrap .kt-blocks-accordion-header:focus-visible,\n\t\t\t\t.kt-accordion-id_e73f70-5b > .kt-accordion-inner-wrap > .wp-block-kadence-pane > .kt-accordion-header-wrap > .kt-blocks-accordion-header.kt-accordion-panel-active{color:var(--global-palette3, #1A202C);background:var(--global-palette8, #F7FAFC);border-top-color:var(--global-palette3, #1A202C);border-right-color:var(--global-palette3, #1A202C);border-bottom-color:var(--global-palette3, #1A202C);border-left-color:var(--global-palette3, #1A202C);}.kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basiccircle ):not( .kt-accodion-icon-style-xclosecircle ):not( .kt-accodion-icon-style-arrowcircle )  > .kt-accordion-inner-wrap > .wp-block-kadence-pane > .kt-accordion-header-wrap > .kt-blocks-accordion-header.kt-accordion-panel-active .kt-blocks-accordion-icon-trigger:after, .kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basiccircle ):not( .kt-accodion-icon-style-xclosecircle ):not( .kt-accodion-icon-style-arrowcircle )  > .kt-accordion-inner-wrap > .wp-block-kadence-pane > .kt-accordion-header-wrap > .kt-blocks-accordion-header.kt-accordion-panel-active .kt-blocks-accordion-icon-trigger:before{background:var(--global-palette3, #1A202C);}.kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basic ):not( .kt-accodion-icon-style-xclose ):not( .kt-accodion-icon-style-arrow ) .kt-blocks-accordion-header.kt-accordion-panel-active .kt-blocks-accordion-icon-trigger{background:var(--global-palette3, #1A202C);}.kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basic ):not( .kt-accodion-icon-style-xclose ):not( .kt-accodion-icon-style-arrow ) .kt-blocks-accordion-header.kt-accordion-panel-active .kt-blocks-accordion-icon-trigger:after, .kt-accordion-id_e73f70-5b:not( .kt-accodion-icon-style-basic ):not( .kt-accodion-icon-style-xclose ):not( .kt-accodion-icon-style-arrow ) .kt-blocks-accordion-header.kt-accordion-panel-active .kt-blocks-accordion-icon-trigger:before{background:var(--global-palette8, #F7FAFC);}@media all and (max-width: 767px){.kt-accordion-id_e73f70-5b .kt-accordion-inner-wrap{display:block;}.kt-accordion-id_e73f70-5b .kt-accordion-inner-wrap .kt-accordion-pane:not(:first-child){margin-top:4px;}}<\/style>\n<div class=\"wp-block-kadence-accordion alignnone\"><div class=\"kt-accordion-wrap kt-accordion-wrap kt-accordion-id_e73f70-5b kt-accordion-has-8-panes kt-active-pane-0 kt-accordion-block kt-pane-header-alignment-left kt-accodion-icon-style-basic kt-accodion-icon-side-right\" style=\"max-width:none\"><div class=\"kt-accordion-inner-wrap\" data-allow-multiple-open=\"false\" data-start-open=\"none\">\n<div class=\"wp-block-kadence-pane kt-accordion-pane kt-accordion-pane-1 kt-pane_7a3236-40\"><div class=\"kt-accordion-header-wrap\"><button class=\"kt-blocks-accordion-header kt-acccordion-button-label-show\"><span class=\"kt-blocks-accordion-title-wrap\"><span class=\"kt-blocks-accordion-title\">1. Data yang tepat berkaitan penyakit jarang jumpa di Malaysia diperlukan:<\/span><\/span><span class=\"kt-blocks-accordion-icon-trigger\"><\/span><\/button><\/div><div class=\"kt-accordion-panel kt-accordion-panel-hidden\"><div class=\"kt-accordion-panel-inner\">\n<ul class=\"wp-block-list\">\n<li>Menentukan definisi yang tepat untuk penyakit jarang jumpa di Malaysia.<\/li>\n\n\n\n<li>Menyediakan dan menyelenggara rekod pendaftaran nasional yang tepat dan terkini mengenai penyakit jarang jumpa, termasuk keadaan genetik dan kongenital.<\/li>\n<\/ul>\n<\/div><\/div><\/div>\n\n\n\n<div class=\"wp-block-kadence-pane kt-accordion-pane kt-accordion-pane-2 kt-pane_034d62-9c\"><div class=\"kt-accordion-header-wrap\"><button class=\"kt-blocks-accordion-header kt-acccordion-button-label-show\"><span class=\"kt-blocks-accordion-title-wrap\"><span class=\"kt-blocks-accordion-title\">2. Perundangan diperlukan untuk melindungi hak individu yang mempunyai penyakit jarang jumpa:<\/span><\/span><span class=\"kt-blocks-accordion-icon-trigger\"><\/span><\/button><\/div><div class=\"kt-accordion-panel kt-accordion-panel-hidden\"><div class=\"kt-accordion-panel-inner\">\n<ul class=\"wp-block-list\">\n<li>Rang undang-undang untuk Penyakit Jarang Jumpa dan Akta Dadah Orphan sangat diperlukan untuk melindungi hak-hak bayi, kanak-kanak, dan individu dengan penyakit jarang jumpa. Ini selaras dengan piawaian dan amalan antarabangsa dan akan membantu membangunkan kriteria khusus untuk menilai penyenaraian dadah baru di Formulari Kementerian Kesihatan.<\/li>\n\n\n\n<li>Pembiayaan dan sumber yang mencukupi perlu diperuntukkan untuk menyediakan akses kepada ujian diagnostik, rawatan, dan pemulihan untuk semua pesakit penyakit jarang jumpa dan keluarga mereka.<\/li>\n\n\n\n<li>Memberi penekanan terhadap industri insurans untuk menghapuskan diskriminasi terhadap pesakit penyakit jarang jumpa yang diwarisi.<\/li>\n\n\n\n<li>Meningkatkan peluang pekerjaan, latihan pendidikan dan sokongan untuk orang kurang upaya dengan penyakit jarang jumpa.<\/li>\n<\/ul>\n<\/div><\/div><\/div>\n\n\n\n<div class=\"wp-block-kadence-pane kt-accordion-pane kt-accordion-pane-3 kt-pane_e5975a-ac\"><div class=\"kt-accordion-header-wrap\"><button class=\"kt-blocks-accordion-header kt-acccordion-button-label-show\"><span class=\"kt-blocks-accordion-title-wrap\"><span class=\"kt-blocks-accordion-title\">3. Pendanaan dan kepakaran untuk perkhidmatan rawatan dan pemulihan:<\/span><\/span><span class=\"kt-blocks-accordion-icon-trigger\"><\/span><\/button><\/div><div class=\"kt-accordion-panel kt-accordion-panel-hidden\"><div class=\"kt-accordion-panel-inner\">\n<ul class=\"wp-block-list\">\n<li>Meningkatkan belanjawan untuk penyiasatan, rawatan, dan pengurusan penyakit jarang jumpa di semua jenis pusat kesihatan dan hospital universiti untuk mencapai ekuiti penjagaan dan perkhidmatan \u2012 tidak mengira di mana sahaja pesakit itu bermastautin.<\/li>\n\n\n\n<li>Meningkatkan pembiayaan untuk perkhidmatan pemulihan, termasuk peralatan dan ahli terapi yang lebih berkelayakan.<\/li>\n\n\n\n<li>Meningkatkan kebolehcapaian orang kurang upaya secara umumnya.<\/li>\n\n\n\n<li>Ini juga akan mengambil kira pesakit-pesakit penyakit jarang jumpa. Memberi jagaan respit untuk ibu bapa dan penjaga pesakit yang mempunyai penyakit jarang jumpa yang menyebabkan ketidakupayaan.<\/li>\n\n\n\n<li>Meningkatkan perkhidmatan penjagaan paliatif untuk pesakit penyakit jarang jumpa di akhir hayat.<\/li>\n\n\n\n<li>Meningkatkan kerjasama antara kementerian dalam rawatan penyakit jarang jumpa.<\/li>\n<\/ul>\n<\/div><\/div><\/div>\n\n\n\n<div class=\"wp-block-kadence-pane kt-accordion-pane kt-accordion-pane-4 kt-pane_e912c1-46\"><div class=\"kt-accordion-header-wrap\"><button class=\"kt-blocks-accordion-header kt-acccordion-button-label-show\"><span class=\"kt-blocks-accordion-title-wrap\"><span class=\"kt-blocks-accordion-title\">4. Program kesedaran mengenai penyakit jarang jumpa bagi pesakit, profesional kesihatan, dan orang awam:<\/span><\/span><span class=\"kt-blocks-accordion-icon-trigger\"><\/span><\/button><\/div><div class=\"kt-accordion-panel kt-accordion-panel-hidden\"><div class=\"kt-accordion-panel-inner\">\n<ul class=\"wp-block-list\">\n<li>Melatih lebih banyak pakar kesihatan dan kaunselor genetik untuk membantu keluarga dengan penyakit jarang jumpa dan mengelakkan penangguhan dalam diagnosis.<\/li>\n\n\n\n<li>Meningkatkan kesedaran di kalangan pihak berkepentingan utama di Malaysia mengenai penyakit jarang jumpa seperti pembuat dasar, ahli akademik, organisasi media, dan badan bukan kerajaan.<\/li>\n\n\n\n<li>Menggunakan rangkaian, pembangunan penggabungan dan pendidikan melalui media untuk meningkatkan profil dan kepekaan masyarakat umum terhadap isu penyakit jarang jumpa.<\/li>\n\n\n\n<li>Meningkatkan fokus pada topik penyakit jarang jumpa dalam latihan perubatan.<\/li>\n<\/ul>\n<\/div><\/div><\/div>\n\n\n\n<div class=\"wp-block-kadence-pane kt-accordion-pane kt-accordion-pane-5 kt-pane_bf5f60-75\"><div class=\"kt-accordion-header-wrap\"><button class=\"kt-blocks-accordion-header kt-acccordion-button-label-show\"><span class=\"kt-blocks-accordion-title-wrap\"><span class=\"kt-blocks-accordion-title\">5. Penjagaan Kehamilan dan Pra-kehamilan:<\/span><\/span><span class=\"kt-blocks-accordion-icon-trigger\"><\/span><\/button><\/div><div class=\"kt-accordion-panel kt-accordion-panel-hidden\"><div class=\"kt-accordion-panel-inner\">\n<ul class=\"wp-block-list\">\n<li>Pengambilan makanan dengan asid folik untuk mencegah kecacatan tiub neural.<\/li>\n\n\n\n<li>Program pendidikan untuk semua wanita dalam lingkungan umur boleh mengandung dan penyediaan penjagaan kesihatan berhubung dengan penyalahgunaan dadah teratogenik.<\/li>\n\n\n\n<li>Program pendidikan untuk ahli sonografi, pakar obstetrik, jururawat dan bidan untuk mengesan tanda-tanda penyakit jarang jumpa semasa pemeriksaan pranatal dan semasa lahir<\/li>\n\n\n\n<li>Program pendidikan untuk jururawat dan bidan mengenai cara memberi rawatan segera kepada bayi yang dilahirkan dengan penyakit jarang jumpa, contohnya bayi yang lahir dengan epidermolisis bulosa, osteogenesis imperfekta (penyakit tulang rapuh), dan atrofi otot spina jenis 1.<\/li>\n<\/ul>\n<\/div><\/div><\/div>\n\n\n\n<div class=\"wp-block-kadence-pane kt-accordion-pane kt-accordion-pane-6 kt-pane_bd64c1-1f\"><div class=\"kt-accordion-header-wrap\"><button class=\"kt-blocks-accordion-header kt-acccordion-button-label-show\"><span class=\"kt-blocks-accordion-title-wrap\"><span class=\"kt-blocks-accordion-title\">6. Program saringan bayi baru lahir untuk penyakit yang menyebabkan ketidakupayaan yang teruk dan kematian:<\/span><\/span><span class=\"kt-blocks-accordion-icon-trigger\"><\/span><\/button><\/div><div class=\"kt-accordion-panel kt-accordion-panel-hidden\"><div class=\"kt-accordion-panel-inner\">\n<ul class=\"wp-block-list\">\n<li>Pemeriksaan bayi baru lahir untuk penyakit metabolik yang diwarisi agar dapat memberikan diagnosis dan rawatan segera.<\/li>\n\n\n\n<li>Pemeriksaan bayi baru lahir untuk penyakit jantung kongenital yang kritikal.<\/li>\n\n\n\n<li>Pemeriksaan bayi baru lahir untuk imunodifisiensi primer jarang jumpa.<\/li>\n\n\n\n<li>Pemeriksaan bayi baru lahir untuk atrofi otot spina jenis 1.<\/li>\n<\/ul>\n<\/div><\/div><\/div>\n\n\n\n<div class=\"wp-block-kadence-pane kt-accordion-pane kt-accordion-pane-7 kt-pane_e9d230-77\"><div class=\"kt-accordion-header-wrap\"><button class=\"kt-blocks-accordion-header kt-acccordion-button-label-show\"><span class=\"kt-blocks-accordion-title-wrap\"><span class=\"kt-blocks-accordion-title\">7. Kemudahan kepakaran dan fasiliti makmal untuk mendiagnosis penyakit genetik yang serius:<\/span><\/span><span class=\"kt-blocks-accordion-icon-trigger\"><\/span><\/button><\/div><div class=\"kt-accordion-panel kt-accordion-panel-hidden\"><div class=\"kt-accordion-panel-inner\">\n<ul class=\"wp-block-list\">\n<li>Peningkatan kapasiti dalam bidang kepakaran kritikal penyakit jarang jumpa seperti saintis genom, ahli genetik klinikal, kaunselor genetik, jururawat genetik dan ahli teknologi serta penyedia penjagaan primer.<\/li>\n\n\n\n<li>Mewujudkan jawatan kerajaan baru misalnya, kaunselor genetik dan saintis genomik serta pengurus data.<\/li>\n\n\n\n<li>Meningkatkan jumlah makmal diagnostik untuk penyakit genetik dan genom di setiap pelosok negara.<\/li>\n<\/ul>\n<\/div><\/div><\/div>\n\n\n\n<div class=\"wp-block-kadence-pane kt-accordion-pane kt-accordion-pane-8 kt-pane_30146e-97\"><div class=\"kt-accordion-header-wrap\"><button class=\"kt-blocks-accordion-header kt-acccordion-button-label-show\"><span class=\"kt-blocks-accordion-title-wrap\"><span class=\"kt-blocks-accordion-title\">8. Mengutamakan penyelidikan dan pembangunan dalam bidang penyakit jarang jumpa:<\/span><\/span><span class=\"kt-blocks-accordion-icon-trigger\"><\/span><\/button><\/div><div class=\"kt-accordion-panel kt-accordion-panel-hidden\"><div class=\"kt-accordion-panel-inner\">\n<ul class=\"wp-block-list\">\n<li>Lebih banyak pendanaan penyelidikan diperlukan untuk penyakit jarang jumpa yang mungkin tidak mempunyai nilai komersial. Banyak farmaseutikal inovatif dan pendekatan terapi baru adalah hasil daripada penyelidikan dalam bidang penyakit jarang jumpa.<\/li>\n\n\n\n<li>Menerokai kemungkinan usaha sama dengan syarikat-syarikat farmaseutikal dan bioteknologi untuk menghasilkan biofarmaseutikal, produk bioserupa, biosensor dan alat perubatan di dalam negara, sekali gus menjana industri baru dalam bidang penyakit jarang jumpa.<\/li>\n<\/ul>\n<\/div><\/div><\/div>\n<\/div><\/div><\/div>\n<\/div><\/div>\n<\/div><\/div><\/div>\n<style>#kt-layout-id_b9e155-d9 > .kt-row-column-wrap{align-content:start;}:where(#kt-layout-id_b9e155-d9 > .kt-row-column-wrap) > .wp-block-kadence-column{justify-content:start;}#kt-layout-id_b9e155-d9 > .kt-row-column-wrap{column-gap:var(--global-kb-gap-md, 2rem);row-gap:var(--global-kb-gap-md, 2rem);max-width:740px;margin-left:auto;margin-right:auto;padding-top:var( --global-kb-row-default-top, 25px );padding-bottom:var( --global-kb-row-default-bottom, 25px );padding-top:8rem;padding-bottom:8rem;grid-template-columns:minmax(0, 1fr);}#kt-layout-id_b9e155-d9{background-image:url('https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/rarediseasemalaysia-1.jpg');background-size:cover;background-position:center center;background-attachment:fixed;background-repeat:no-repeat;}#kt-layout-id_b9e155-d9 > .kt-row-layout-overlay{opacity:0.80;background-color:var(--global-palette1, #3182CE);}@media all and (max-width: 1024px), only screen and (min-device-width: 1024px) and (max-device-width: 1366px) and (-webkit-min-device-pixel-ratio: 2) and (hover: none){#kt-layout-id_b9e155-d9{background-attachment:scroll;}}@media all and (max-width: 1024px){#kt-layout-id_b9e155-d9 > .kt-row-column-wrap{grid-template-columns:minmax(0, 1fr);}}@media all and (max-width: 767px){#kt-layout-id_b9e155-d9 > .kt-row-column-wrap{grid-template-columns:minmax(0, 1fr);}}<\/style>\n<div class=\"wp-block-kadence-rowlayout alignfull\" id=\"One-in-every-4,000-people-of-the-general-population\"><div id=\"kt-layout-id_b9e155-d9\" class=\"kt-row-layout-inner kt-row-has-bg kt-layout-id_b9e155-d9 kt-jarallax\" style=\"background-image:url(https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/rarediseasemalaysia-1.jpg)\"><div class=\"kt-row-layout-overlay kt-row-overlay-normal\"><\/div><div class=\"kt-row-column-wrap kt-has-1-columns kt-gutter-default kt-v-gutter-default kt-row-valign-top kt-row-layout-equal kt-tab-layout-inherit kt-m-colapse-left-to-right kt-mobile-layout-row\"><style>.kadence-column_ca672e-be > .kt-inside-inner-col{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_ca672e-be > .kt-inside-inner-col,.kadence-column_ca672e-be > .kt-inside-inner-col:before{border-top-left-radius:0px;border-top-right-radius:0px;border-bottom-right-radius:0px;border-bottom-left-radius:0px;}.kadence-column_ca672e-be > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_ca672e-be > .kt-inside-inner-col{flex-direction:column;}.kadence-column_ca672e-be > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_ca672e-be > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_ca672e-be{position:relative;}@media all and (max-width: 1024px){.kadence-column_ca672e-be > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_ca672e-be > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-1 kadence-column_ca672e-be\"><div class=\"kt-inside-inner-col\">\n<h3 class=\"has-text-align-center has-theme-palette-9-color has-text-color wp-block-heading\">Meningkatkan kesedaran di kalangan pihak berkepentingan utama di Malaysia mengenai penyakit jarang jumpa seperti pembuat dasar, ahli akademik, organisasi media, dan badan bukan kerajaan.<\/h3>\n<\/div><\/div>\n<\/div><\/div><\/div>\n<style>#kt-layout-id_e7578e-be > .kt-row-column-wrap{align-content:start;}:where(#kt-layout-id_e7578e-be > .kt-row-column-wrap) > .wp-block-kadence-column{justify-content:start;}#kt-layout-id_e7578e-be > .kt-row-column-wrap{column-gap:var(--global-kb-gap-md, 2rem);row-gap:var(--global-kb-gap-md, 2rem);padding-top:var( --global-kb-row-default-top, 25px );padding-bottom:var( --global-kb-row-default-bottom, 25px );padding-top:8rem;padding-bottom:8rem;grid-template-columns:minmax(0, 1fr);}#kt-layout-id_e7578e-be > .kt-row-layout-overlay{opacity:0.30;}@media all and (max-width: 1024px){#kt-layout-id_e7578e-be > .kt-row-column-wrap{grid-template-columns:minmax(0, 1fr);}}@media all and (max-width: 767px){#kt-layout-id_e7578e-be > .kt-row-column-wrap{grid-template-columns:minmax(0, 1fr);}}<\/style>\n<div class=\"wp-block-kadence-rowlayout alignfull\" id=\"The-Challenges-and-Recommendations\"><div id=\"kt-layout-id_e7578e-be\" class=\"kt-row-layout-inner kt-row-has-bg kt-layout-id_e7578e-be has-theme-palette-8-background-color\"><div class=\"kt-row-column-wrap kt-has-1-columns kt-gutter-default kt-v-gutter-default kt-row-valign-top kt-row-layout-equal kt-tab-layout-inherit kt-m-colapse-left-to-right kt-mobile-layout-row\"><style>.kadence-column_d0d37b-a1 > .kt-inside-inner-col{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_d0d37b-a1 > .kt-inside-inner-col,.kadence-column_d0d37b-a1 > .kt-inside-inner-col:before{border-top-left-radius:0px;border-top-right-radius:0px;border-bottom-right-radius:0px;border-bottom-left-radius:0px;}.kadence-column_d0d37b-a1 > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_d0d37b-a1 > .kt-inside-inner-col{flex-direction:column;}.kadence-column_d0d37b-a1 > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_d0d37b-a1 > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_d0d37b-a1{position:relative;}@media all and (max-width: 1024px){.kadence-column_d0d37b-a1 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_d0d37b-a1 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-1 kadence-column_d0d37b-a1\"><div class=\"kt-inside-inner-col\">\n<h4 class=\"has-text-align-center wp-block-heading\">Cabaran dan Pengesyoran<\/h4>\n\n\n\n<p class=\"has-text-align-center\">\u201cChallenges faced by Malaysia Rare Disease communities and Recommendations\u201d ditulis oleh<br\/><strong>Prof Thong Meow Keong<\/strong> dan <strong>Dr. Azlina Ahmad-Annuar<\/strong>.<\/p>\n\n\n\n<p class=\"has-text-align-center\">Kandungan ini diterbitkan sebagai<br\/><a href=\"http:\/\/www.ideas.org.my\/brief-ideas-no-10-national-policy-on-rare-diseases-living-with-dignity-in-search-of-solutions-for-rare-diseases\/\">Brief <strong>IDEAS<\/strong> No 10 \u2013National Policy on Rare Diseases Living with Dignity: In Search of Solutions for Rare Diseases.<\/a><\/p>\n\n\n<style>#kt-layout-id_d35a52-c8 > .kt-row-column-wrap{align-content:center;}:where(#kt-layout-id_d35a52-c8 > .kt-row-column-wrap) > .wp-block-kadence-column{justify-content:center;}#kt-layout-id_d35a52-c8 > .kt-row-column-wrap{column-gap:var(--global-kb-gap-md, 2rem);row-gap:var(--global-kb-gap-md, 2rem);padding-top:var( --global-kb-row-default-top, 25px );padding-bottom:var( --global-kb-row-default-bottom, 25px );padding-top:0%;padding-bottom:0%;padding-left:5%;padding-right:5%;}#kt-layout-id_d35a52-c8 > .kt-row-column-wrap > div:not(.added-for-specificity){grid-column:initial;}#kt-layout-id_d35a52-c8 > .kt-row-column-wrap{grid-template-columns:repeat(5, minmax(0, 1fr));}#kt-layout-id_d35a52-c8 > .kt-row-layout-overlay{opacity:0.30;}@media all and (max-width: 1024px){#kt-layout-id_d35a52-c8 > .kt-row-column-wrap{padding-right:10%;padding-left:10%;grid-template-columns:repeat(5, minmax(0, 1fr));}}@media all and (max-width: 1024px){#kt-layout-id_d35a52-c8 > .kt-row-column-wrap > div:not(.added-for-specificity){grid-column:initial;}}@media all and (max-width: 767px){#kt-layout-id_d35a52-c8 > .kt-row-column-wrap{padding-left:3%;padding-right:3%;grid-template-columns:minmax(0, 1fr);}#kt-layout-id_d35a52-c8 > .kt-row-column-wrap > div:not(.added-for-specificity){grid-column:initial;}}<\/style>\n<div class=\"wp-block-kadence-rowlayout alignnone\"><div id=\"kt-layout-id_d35a52-c8\" class=\"kt-row-layout-inner kt-layout-id_d35a52-c8\"><div class=\"kt-row-column-wrap kt-has-5-columns kt-gutter-default kt-v-gutter-default kt-row-valign-middle kt-row-layout-equal kt-tab-layout-inherit kt-m-colapse-left-to-right kt-mobile-layout-row\"><style>.kadence-column_d8dab0-ad > .kt-inside-inner-col{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_d8dab0-ad > .kt-inside-inner-col,.kadence-column_d8dab0-ad > .kt-inside-inner-col:before{border-top-left-radius:0px;border-top-right-radius:0px;border-bottom-right-radius:0px;border-bottom-left-radius:0px;}.kadence-column_d8dab0-ad > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_d8dab0-ad > .kt-inside-inner-col{flex-direction:column;}.kadence-column_d8dab0-ad > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_d8dab0-ad > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_d8dab0-ad{position:relative;}@media all and (max-width: 1024px){.kadence-column_d8dab0-ad > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_d8dab0-ad > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-1 kadence-column_d8dab0-ad\"><div class=\"kt-inside-inner-col\"><style>.wp-block-kadence-column.kb-section-dir-horizontal > .kt-inside-inner-col > #kt-info-box_fad986-ba{max-width:100vw;}.wp-block-kadence-column.kb-section-dir-horizontal > .kt-inside-inner-col > #kt-info-box_fad986-ba .kt-blocks-info-box-link-wrap{max-width:unset;}#kt-info-box_fad986-ba .kt-blocks-info-box-link-wrap{border-color:var(--global-palette9, #ffffff);background:var(--global-palette9, #ffffff);max-width:100vw;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;margin-top:2%;margin-right:2%;margin-bottom:2%;margin-left:2%;}#kt-info-box_fad986-ba .kt-blocks-info-box-link-wrap:hover{border-color:var(--global-palette9, #ffffff);background:var(--global-palette9, #ffffff);}#kt-info-box_fad986-ba.wp-block-kadence-infobox{max-width:100%;}#kt-info-box_fad986-ba .kadence-info-box-image-inner-intrisic-container .kadence-info-box-image-intrisic{padding-bottom:66.6667%;width:768px;height:0px;max-width:100%;}#kt-info-box_fad986-ba .kadence-info-box-icon-container .kt-info-svg-icon, #kt-info-box_fad986-ba .kt-info-svg-icon-flip, #kt-info-box_fad986-ba .kt-blocks-info-box-number{font-size:50px;}#kt-info-box_fad986-ba .kt-blocks-info-box-media{color:#444444;background:transparent;border-color:#444444;border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;}#kt-info-box_fad986-ba .kt-blocks-info-box-media-container{margin-top:0px;margin-right:0px;margin-bottom:0px;margin-left:0px;}#kt-info-box_fad986-ba .kt-blocks-info-box-link-wrap:hover .kt-blocks-info-box-media{color:#444444;background:transparent;border-color:#444444;}#kt-info-box_fad986-ba .kt-infobox-textcontent h4.kt-blocks-info-box-title{font-size:1.2rem;padding-top:0px;padding-right:15px;padding-bottom:0px;padding-left:15px;margin-top:10px;margin-right:0px;margin-bottom:10px;margin-left:0px;}#kt-info-box_fad986-ba .kt-blocks-info-box-learnmore{color:var(--global-palette9, #ffffff);background:var(--global-palette2, #2B6CB0);border-color:#555555;border-radius:20px;font-size:13px;font-weight:bold;border-width:0px 0px 0px 0px;padding-top:8px;padding-right:16px;padding-bottom:8px;padding-left:16px;margin-top:0px;margin-right:0px;margin-bottom:20px;margin-left:0px;}#kt-info-box_fad986-ba .kt-blocks-info-box-link-wrap:hover .kt-blocks-info-box-learnmore,#kt-info-box_fad986-ba .kt-blocks-info-box-link-wrap .kt-blocks-info-box-learnmore:focus{color:#ffffff;background:var(--global-palette1, #3182CE);border-color:#444444;}#kt-info-box_fad986-ba .kt-blocks-info-box-link-wrap{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}#kt-info-box_fad986-ba .kt-blocks-info-box-link-wrap:hover{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}@media all and (max-width: 1024px){#kt-info-box_fad986-ba .kt-blocks-info-box-link-wrap{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}}@media all and (max-width: 1024px){#kt-info-box_fad986-ba .kt-blocks-info-box-link-wrap:hover{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}}@media all and (max-width: 767px){#kt-info-box_fad986-ba .kt-blocks-info-box-link-wrap{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}#kt-info-box_fad986-ba .kt-blocks-info-box-link-wrap:hover{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}}<\/style>\n<div id=\"kt-info-box_fad986-ba\" class=\"wp-block-kadence-infobox\"><a class=\"kt-blocks-info-box-link-wrap info-box-link kt-blocks-info-box-media-align-top kt-info-halign-center\" href=\"https:\/\/rarediseasemalaysia.com\/challenges-and-recommendations\/lack-of-recognition-and-inclusiveness\/\"><div class=\"kt-blocks-info-box-media-container\"><div class=\"kt-blocks-info-box-media kt-info-media-animate-none\"><div class=\"kadence-info-box-image-inner-intrisic-container\"><div class=\"kadence-info-box-image-intrisic kt-info-animate-none\"><div class=\"kadence-info-box-image-inner-intrisic\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/qzvtbe_whsw-768x512.jpg\" alt=\"\" width=\"768\" height=\"512\" class=\"kt-info-box-image wp-image-203\" srcset=\"https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/qzvtbe_whsw-768x512.jpg 768w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/qzvtbe_whsw-150x100.jpg 150w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/qzvtbe_whsw-350x233.jpg 350w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/qzvtbe_whsw.jpg 1600w\" sizes=\"auto, (max-width: 768px) 100vw, 768px\" \/><\/div><\/div><\/div><\/div><\/div><div class=\"kt-infobox-textcontent\"><h4 class=\"kt-blocks-info-box-title\">Kekurangan Pengiktirafan dan Keterangkuman<\/h4><p class=\"kt-blocks-info-box-text\"><\/p><div class=\"kt-blocks-info-box-learnmore-wrap\"><span class=\"kt-blocks-info-box-learnmore\">Ketahui Lebih Lanjut<\/span><\/div><\/div><\/a><\/div>\n<\/div><\/div>\n\n\n<style>.kadence-column_d19ed6-f9 > .kt-inside-inner-col{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_d19ed6-f9 > .kt-inside-inner-col,.kadence-column_d19ed6-f9 > .kt-inside-inner-col:before{border-top-left-radius:0px;border-top-right-radius:0px;border-bottom-right-radius:0px;border-bottom-left-radius:0px;}.kadence-column_d19ed6-f9 > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_d19ed6-f9 > .kt-inside-inner-col{flex-direction:column;}.kadence-column_d19ed6-f9 > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_d19ed6-f9 > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_d19ed6-f9{position:relative;}@media all and (max-width: 1024px){.kadence-column_d19ed6-f9 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_d19ed6-f9 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-2 kadence-column_d19ed6-f9\"><div class=\"kt-inside-inner-col\"><style>.wp-block-kadence-column.kb-section-dir-horizontal > .kt-inside-inner-col > #kt-info-box_cde75d-aa{max-width:100vw;}.wp-block-kadence-column.kb-section-dir-horizontal > .kt-inside-inner-col > #kt-info-box_cde75d-aa .kt-blocks-info-box-link-wrap{max-width:unset;}#kt-info-box_cde75d-aa .kt-blocks-info-box-link-wrap{border-color:var(--global-palette9, #ffffff);background:var(--global-palette9, #ffffff);max-width:100vw;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;margin-top:2%;margin-right:2%;margin-bottom:2%;margin-left:2%;}#kt-info-box_cde75d-aa .kt-blocks-info-box-link-wrap:hover{border-color:var(--global-palette9, #ffffff);background:var(--global-palette9, #ffffff);}#kt-info-box_cde75d-aa.wp-block-kadence-infobox{max-width:100%;}#kt-info-box_cde75d-aa .kadence-info-box-image-inner-intrisic-container .kadence-info-box-image-intrisic{padding-bottom:66.7969%;width:768px;height:0px;max-width:100%;}#kt-info-box_cde75d-aa .kadence-info-box-icon-container .kt-info-svg-icon, #kt-info-box_cde75d-aa .kt-info-svg-icon-flip, #kt-info-box_cde75d-aa .kt-blocks-info-box-number{font-size:50px;}#kt-info-box_cde75d-aa .kt-blocks-info-box-media{color:#444444;background:transparent;border-color:#444444;border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;}#kt-info-box_cde75d-aa .kt-blocks-info-box-media-container{margin-top:0px;margin-right:0px;margin-bottom:0px;margin-left:0px;}#kt-info-box_cde75d-aa .kt-blocks-info-box-link-wrap:hover .kt-blocks-info-box-media{color:#444444;background:transparent;border-color:#444444;}#kt-info-box_cde75d-aa .kt-infobox-textcontent h4.kt-blocks-info-box-title{font-size:1.2rem;padding-top:0px;padding-right:15px;padding-bottom:0px;padding-left:15px;margin-top:10px;margin-right:0px;margin-bottom:10px;margin-left:0px;}#kt-info-box_cde75d-aa .kt-blocks-info-box-learnmore{color:var(--global-palette9, #ffffff);background:var(--global-palette2, #2B6CB0);border-color:#555555;border-radius:20px;font-size:13px;font-weight:bold;border-width:0px 0px 0px 0px;padding-top:8px;padding-right:16px;padding-bottom:8px;padding-left:16px;margin-top:0px;margin-right:0px;margin-bottom:20px;margin-left:0px;}#kt-info-box_cde75d-aa .kt-blocks-info-box-link-wrap:hover .kt-blocks-info-box-learnmore,#kt-info-box_cde75d-aa .kt-blocks-info-box-link-wrap .kt-blocks-info-box-learnmore:focus{color:#ffffff;background:var(--global-palette1, #3182CE);border-color:#444444;}#kt-info-box_cde75d-aa .kt-blocks-info-box-link-wrap{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}#kt-info-box_cde75d-aa .kt-blocks-info-box-link-wrap:hover{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}@media all and (max-width: 1024px){#kt-info-box_cde75d-aa .kt-blocks-info-box-link-wrap{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}}@media all and (max-width: 1024px){#kt-info-box_cde75d-aa .kt-blocks-info-box-link-wrap:hover{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}}@media all and (max-width: 767px){#kt-info-box_cde75d-aa .kt-blocks-info-box-link-wrap{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}#kt-info-box_cde75d-aa .kt-blocks-info-box-link-wrap:hover{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}}<\/style>\n<div id=\"kt-info-box_cde75d-aa\" class=\"wp-block-kadence-infobox\"><a class=\"kt-blocks-info-box-link-wrap info-box-link kt-blocks-info-box-media-align-top kt-info-halign-center\" href=\"https:\/\/rarediseasemalaysia.com\/challenges-and-recommendations\/lack-of-awareness-and-comprehensive-healthcare-provisions\/\"><div class=\"kt-blocks-info-box-media-container\"><div class=\"kt-blocks-info-box-media kt-info-media-animate-none\"><div class=\"kadence-info-box-image-inner-intrisic-container\"><div class=\"kadence-info-box-image-intrisic kt-info-animate-none\"><div class=\"kadence-info-box-image-inner-intrisic\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/xnrhhomhru4-768x513.jpg\" alt=\"\" width=\"768\" height=\"513\" class=\"kt-info-box-image wp-image-204\" srcset=\"https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/xnrhhomhru4-768x513.jpg 768w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/xnrhhomhru4-150x100.jpg 150w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/xnrhhomhru4-350x234.jpg 350w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/xnrhhomhru4.jpg 1600w\" sizes=\"auto, (max-width: 768px) 100vw, 768px\" \/><\/div><\/div><\/div><\/div><\/div><div class=\"kt-infobox-textcontent\"><h4 class=\"kt-blocks-info-box-title\">Kurangnya Kesedaran dan Peruntukan Kesihatan Komprehensif<\/h4><p class=\"kt-blocks-info-box-text\"><\/p><div class=\"kt-blocks-info-box-learnmore-wrap\"><span class=\"kt-blocks-info-box-learnmore\">Ketahui Lebih Lanjut<\/span><\/div><\/div><\/a><\/div>\n<\/div><\/div>\n\n\n<style>.kadence-column_2682c9-f6 > .kt-inside-inner-col{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_2682c9-f6 > .kt-inside-inner-col,.kadence-column_2682c9-f6 > .kt-inside-inner-col:before{border-top-left-radius:0px;border-top-right-radius:0px;border-bottom-right-radius:0px;border-bottom-left-radius:0px;}.kadence-column_2682c9-f6 > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_2682c9-f6 > .kt-inside-inner-col{flex-direction:column;}.kadence-column_2682c9-f6 > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_2682c9-f6 > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_2682c9-f6{position:relative;}@media all and (max-width: 1024px){.kadence-column_2682c9-f6 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_2682c9-f6 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-3 kadence-column_2682c9-f6\"><div class=\"kt-inside-inner-col\"><style>.wp-block-kadence-column.kb-section-dir-horizontal > .kt-inside-inner-col > #kt-info-box_98534c-95{max-width:100vw;}.wp-block-kadence-column.kb-section-dir-horizontal > .kt-inside-inner-col > #kt-info-box_98534c-95 .kt-blocks-info-box-link-wrap{max-width:unset;}#kt-info-box_98534c-95 .kt-blocks-info-box-link-wrap{border-color:var(--global-palette9, #ffffff);background:var(--global-palette9, #ffffff);max-width:100vw;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;margin-top:2%;margin-right:2%;margin-bottom:2%;margin-left:2%;}#kt-info-box_98534c-95 .kt-blocks-info-box-link-wrap:hover{border-color:var(--global-palette9, #ffffff);background:var(--global-palette9, #ffffff);}#kt-info-box_98534c-95.wp-block-kadence-infobox{max-width:100%;}#kt-info-box_98534c-95 .kadence-info-box-image-inner-intrisic-container .kadence-info-box-image-intrisic{padding-bottom:75%;width:768px;height:0px;max-width:100%;}#kt-info-box_98534c-95 .kadence-info-box-icon-container .kt-info-svg-icon, #kt-info-box_98534c-95 .kt-info-svg-icon-flip, #kt-info-box_98534c-95 .kt-blocks-info-box-number{font-size:50px;}#kt-info-box_98534c-95 .kt-blocks-info-box-media{color:#444444;background:transparent;border-color:#444444;border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;}#kt-info-box_98534c-95 .kt-blocks-info-box-media-container{margin-top:0px;margin-right:0px;margin-bottom:0px;margin-left:0px;}#kt-info-box_98534c-95 .kt-blocks-info-box-link-wrap:hover .kt-blocks-info-box-media{color:#444444;background:transparent;border-color:#444444;}#kt-info-box_98534c-95 .kt-infobox-textcontent h4.kt-blocks-info-box-title{font-size:1.2rem;padding-top:0px;padding-right:15px;padding-bottom:0px;padding-left:15px;margin-top:10px;margin-right:0px;margin-bottom:10px;margin-left:0px;}#kt-info-box_98534c-95 .kt-blocks-info-box-learnmore{color:var(--global-palette9, #ffffff);background:var(--global-palette2, #2B6CB0);border-color:#555555;border-radius:20px;font-size:13px;font-weight:bold;border-width:0px 0px 0px 0px;padding-top:8px;padding-right:16px;padding-bottom:8px;padding-left:16px;margin-top:0px;margin-right:0px;margin-bottom:20px;margin-left:0px;}#kt-info-box_98534c-95 .kt-blocks-info-box-link-wrap:hover .kt-blocks-info-box-learnmore,#kt-info-box_98534c-95 .kt-blocks-info-box-link-wrap .kt-blocks-info-box-learnmore:focus{color:#ffffff;background:var(--global-palette1, #3182CE);border-color:#444444;}#kt-info-box_98534c-95 .kt-blocks-info-box-link-wrap{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}#kt-info-box_98534c-95 .kt-blocks-info-box-link-wrap:hover{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}@media all and (max-width: 1024px){#kt-info-box_98534c-95 .kt-blocks-info-box-link-wrap{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}}@media all and (max-width: 1024px){#kt-info-box_98534c-95 .kt-blocks-info-box-link-wrap:hover{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}}@media all and (max-width: 767px){#kt-info-box_98534c-95 .kt-blocks-info-box-link-wrap{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}#kt-info-box_98534c-95 .kt-blocks-info-box-link-wrap:hover{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}}<\/style>\n<div id=\"kt-info-box_98534c-95\" class=\"wp-block-kadence-infobox\"><a class=\"kt-blocks-info-box-link-wrap info-box-link kt-blocks-info-box-media-align-top kt-info-halign-center\" href=\"https:\/\/rarediseasemalaysia.com\/challenges-and-recommendations\/lack-of-protection-of-the-rights-and-dignity-of-individuals-with-rare-diseases\/\"><div class=\"kt-blocks-info-box-media-container\"><div class=\"kt-blocks-info-box-media kt-info-media-animate-none\"><div class=\"kadence-info-box-image-inner-intrisic-container\"><div class=\"kadence-info-box-image-intrisic kt-info-animate-none\"><div class=\"kadence-info-box-image-inner-intrisic\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/5oeprkurtam-768x576.jpg\" alt=\"\" width=\"768\" height=\"576\" class=\"kt-info-box-image wp-image-245\" srcset=\"https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/5oeprkurtam-768x576.jpg 768w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/5oeprkurtam-150x113.jpg 150w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/5oeprkurtam-350x263.jpg 350w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/5oeprkurtam.jpg 1600w\" sizes=\"auto, (max-width: 768px) 100vw, 768px\" \/><\/div><\/div><\/div><\/div><\/div><div class=\"kt-infobox-textcontent\"><h4 class=\"kt-blocks-info-box-title\">Kurangnya Perlindungan Hak dan Maruah Individu dengan Penyakit Jarang Jumpa<\/h4><p class=\"kt-blocks-info-box-text\"><\/p><div class=\"kt-blocks-info-box-learnmore-wrap\"><span class=\"kt-blocks-info-box-learnmore\">Ketahui Lebih Lanjut<\/span><\/div><\/div><\/a><\/div>\n<\/div><\/div>\n\n\n<style>.kadence-column_d5ae13-23 > .kt-inside-inner-col{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_d5ae13-23 > .kt-inside-inner-col,.kadence-column_d5ae13-23 > .kt-inside-inner-col:before{border-top-left-radius:0px;border-top-right-radius:0px;border-bottom-right-radius:0px;border-bottom-left-radius:0px;}.kadence-column_d5ae13-23 > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_d5ae13-23 > .kt-inside-inner-col{flex-direction:column;}.kadence-column_d5ae13-23 > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_d5ae13-23 > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_d5ae13-23{position:relative;}@media all and (max-width: 1024px){.kadence-column_d5ae13-23 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_d5ae13-23 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-4 kadence-column_d5ae13-23\"><div class=\"kt-inside-inner-col\"><style>.wp-block-kadence-column.kb-section-dir-horizontal > .kt-inside-inner-col > #kt-info-box_1425a7-4e{max-width:100vw;}.wp-block-kadence-column.kb-section-dir-horizontal > .kt-inside-inner-col > #kt-info-box_1425a7-4e .kt-blocks-info-box-link-wrap{max-width:unset;}#kt-info-box_1425a7-4e .kt-blocks-info-box-link-wrap{border-color:var(--global-palette9, #ffffff);background:var(--global-palette9, #ffffff);max-width:100vw;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;margin-top:2%;margin-right:2%;margin-bottom:2%;margin-left:2%;}#kt-info-box_1425a7-4e .kt-blocks-info-box-link-wrap:hover{border-color:var(--global-palette9, #ffffff);background:var(--global-palette9, #ffffff);}#kt-info-box_1425a7-4e.wp-block-kadence-infobox{max-width:100%;}#kt-info-box_1425a7-4e .kadence-info-box-image-inner-intrisic-container .kadence-info-box-image-intrisic{padding-bottom:66.6667%;width:768px;height:0px;max-width:100%;}#kt-info-box_1425a7-4e .kadence-info-box-icon-container .kt-info-svg-icon, #kt-info-box_1425a7-4e .kt-info-svg-icon-flip, #kt-info-box_1425a7-4e .kt-blocks-info-box-number{font-size:50px;}#kt-info-box_1425a7-4e .kt-blocks-info-box-media{color:#444444;background:transparent;border-color:#444444;border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;}#kt-info-box_1425a7-4e .kt-blocks-info-box-media-container{margin-top:0px;margin-right:0px;margin-bottom:0px;margin-left:0px;}#kt-info-box_1425a7-4e .kt-blocks-info-box-link-wrap:hover .kt-blocks-info-box-media{color:#444444;background:transparent;border-color:#444444;}#kt-info-box_1425a7-4e .kt-infobox-textcontent h4.kt-blocks-info-box-title{font-size:1.2rem;padding-top:0px;padding-right:15px;padding-bottom:0px;padding-left:15px;margin-top:10px;margin-right:0px;margin-bottom:10px;margin-left:0px;}#kt-info-box_1425a7-4e .kt-blocks-info-box-learnmore{color:var(--global-palette9, #ffffff);background:var(--global-palette2, #2B6CB0);border-color:#555555;border-radius:20px;font-size:13px;font-weight:bold;border-width:0px 0px 0px 0px;padding-top:8px;padding-right:16px;padding-bottom:8px;padding-left:16px;margin-top:0px;margin-right:0px;margin-bottom:20px;margin-left:0px;}#kt-info-box_1425a7-4e .kt-blocks-info-box-link-wrap:hover .kt-blocks-info-box-learnmore,#kt-info-box_1425a7-4e .kt-blocks-info-box-link-wrap .kt-blocks-info-box-learnmore:focus{color:#ffffff;background:var(--global-palette1, #3182CE);border-color:#444444;}#kt-info-box_1425a7-4e .kt-blocks-info-box-link-wrap{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}#kt-info-box_1425a7-4e .kt-blocks-info-box-link-wrap:hover{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}@media all and (max-width: 1024px){#kt-info-box_1425a7-4e .kt-blocks-info-box-link-wrap{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}}@media all and (max-width: 1024px){#kt-info-box_1425a7-4e .kt-blocks-info-box-link-wrap:hover{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}}@media all and (max-width: 767px){#kt-info-box_1425a7-4e .kt-blocks-info-box-link-wrap{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}#kt-info-box_1425a7-4e .kt-blocks-info-box-link-wrap:hover{box-shadow:0px 15px 30px -10px rgba(34, 35, 66, 0.3);}}<\/style>\n<div id=\"kt-info-box_1425a7-4e\" class=\"wp-block-kadence-infobox\"><a class=\"kt-blocks-info-box-link-wrap info-box-link kt-blocks-info-box-media-align-top kt-info-halign-center\" href=\"https:\/\/rarediseasemalaysia.com\/challenges-and-recommendations\/lack-of-access-to-medications\/\"><div class=\"kt-blocks-info-box-media-container\"><div class=\"kt-blocks-info-box-media kt-info-media-animate-none\"><div class=\"kadence-info-box-image-inner-intrisic-container\"><div class=\"kadence-info-box-image-intrisic kt-info-animate-none\"><div class=\"kadence-info-box-image-inner-intrisic\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/k1pgqk2copm-768x512.jpg\" alt=\"\" width=\"768\" height=\"512\" class=\"kt-info-box-image wp-image-202\" srcset=\"https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/k1pgqk2copm-768x512.jpg 768w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/k1pgqk2copm-150x100.jpg 150w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/k1pgqk2copm-350x233.jpg 350w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/k1pgqk2copm.jpg 1600w\" sizes=\"auto, (max-width: 768px) 100vw, 768px\" \/><\/div><\/div><\/div><\/div><\/div><div class=\"kt-infobox-textcontent\"><h4 class=\"kt-blocks-info-box-title\">Kekurangan Akses Ke Ubat-Ubatan<\/h4><p class=\"kt-blocks-info-box-text\"><\/p><div class=\"kt-blocks-info-box-learnmore-wrap\"><span class=\"kt-blocks-info-box-learnmore\">Ketahui Lebih Lanjut<\/span><\/div><\/div><\/a><\/div>\n<\/div><\/div>\n\n\n<style>.kadence-column_489a35-be > .kt-inside-inner-col{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_489a35-be > .kt-inside-inner-col,.kadence-column_489a35-be > .kt-inside-inner-col:before{border-top-left-radius:0px;border-top-right-radius:0px;border-bottom-right-radius:0px;border-bottom-left-radius:0px;}.kadence-column_489a35-be > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_489a35-be > .kt-inside-inner-col{flex-direction:column;}.kadence-column_489a35-be > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_489a35-be > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_489a35-be{position:relative;}@media all and (max-width: 1024px){.kadence-column_489a35-be > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_489a35-be > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-5 kadence-column_489a35-be\"><div class=\"kt-inside-inner-col\"><style>.wp-block-kadence-column.kb-section-dir-horizontal > .kt-inside-inner-col > #kt-info-box_c8d089-ca{max-width:100vw;}.wp-block-kadence-column.kb-section-dir-horizontal > .kt-inside-inner-col > #kt-info-box_c8d089-ca .kt-blocks-info-box-link-wrap{max-width:unset;}#kt-info-box_c8d089-ca .kt-blocks-info-box-link-wrap{border-color:var(--global-palette9, #ffffff);background:var(--global-palette9, #ffffff);max-width:100vw;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;margin-top:2%;margin-right:2%;margin-bottom:2%;margin-left:2%;}#kt-info-box_c8d089-ca .kt-blocks-info-box-link-wrap:hover{border-color:var(--global-palette9, 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href=\"https:\/\/rarediseasemalaysia.com\/challenges-and-recommendations\/recommendations\/\"><div class=\"kt-blocks-info-box-media-container\"><div class=\"kt-blocks-info-box-media kt-info-media-animate-none\"><div class=\"kadence-info-box-image-inner-intrisic-container\"><div class=\"kadence-info-box-image-intrisic kt-info-animate-none\"><div class=\"kadence-info-box-image-inner-intrisic\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/mqpmdf1mere-768x513.jpg\" alt=\"\" width=\"768\" height=\"513\" class=\"kt-info-box-image wp-image-1092\" srcset=\"https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/mqpmdf1mere-768x513.jpg 768w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/mqpmdf1mere-150x100.jpg 150w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/mqpmdf1mere-350x234.jpg 350w, https:\/\/rarediseasemalaysia.com\/wp-content\/uploads\/mqpmdf1mere.jpg 1600w\" sizes=\"auto, (max-width: 768px) 100vw, 768px\" \/><\/div><\/div><\/div><\/div><\/div><div class=\"kt-infobox-textcontent\"><h4 class=\"kt-blocks-info-box-title\">Pengesyoran<\/h4><p class=\"kt-blocks-info-box-text\"><\/p><div class=\"kt-blocks-info-box-learnmore-wrap\"><span class=\"kt-blocks-info-box-learnmore\">Ketahui Lebih Lanjut<\/span><\/div><\/div><\/a><\/div>\n<\/div><\/div>\n<\/div><\/div><\/div>\n<\/div><\/div>\n<\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"<p>Meningkatkan kesedaran di kalangan pihak berkepentingan utama di Malaysia mengenai penyakit jarang jumpa seperti pembuat dasar, ahli akademik, organisasi media, dan badan bukan kerajaan. Cabaran dan Pengesyoran \u201cChallenges faced by Malaysia Rare Disease communities and Recommendations\u201d ditulis olehProf Thong Meow Keong dan Dr. Azlina Ahmad-Annuar. Kandungan ini diterbitkan sebagaiBrief IDEAS No 10 \u2013National Policy on&#8230;<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":1608,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_seopress_robots_primary_cat":"","_seopress_titles_title":"","_seopress_titles_desc":"Meningkatkan kesedaran di kalangan pihak berkepentingan utama di Malaysia mengenai penyakit jarang jumpa seperti pembuat dasar, ahli akademik, organisasi media, dan badan bukan kerajaan.","_seopress_robots_index":"","_kad_blocks_custom_css":"","_kad_blocks_head_custom_js":"","_kad_blocks_body_custom_js":"","_kad_blocks_footer_custom_js":"","_kad_post_transparent":"","_kad_post_title":"","_kad_post_layout":"","_kad_post_sidebar_id":"","_kad_post_content_style":"","_kad_post_vertical_padding":"","_kad_post_feature":"","_kad_post_feature_position":"","_kad_post_header":false,"_kad_post_footer":false,"_kad_post_classname":"","footnotes":""},"class_list":["post-1612","page","type-page","status-publish","hentry"],"taxonomy_info":[],"featured_image_src_large":false,"author_info":{"display_name":"Rare","author_link":"https:\/\/rarediseasemalaysia.com\/ms\/author\/julian-rare\/"},"comment_info":0,"_links":{"self":[{"href":"https:\/\/rarediseasemalaysia.com\/ms\/wp-json\/wp\/v2\/pages\/1612","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseasemalaysia.com\/ms\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/rarediseasemalaysia.com\/ms\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseasemalaysia.com\/ms\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseasemalaysia.com\/ms\/wp-json\/wp\/v2\/comments?post=1612"}],"version-history":[{"count":0,"href":"https:\/\/rarediseasemalaysia.com\/ms\/wp-json\/wp\/v2\/pages\/1612\/revisions"}],"up":[{"embeddable":true,"href":"https:\/\/rarediseasemalaysia.com\/ms\/wp-json\/wp\/v2\/pages\/1608"}],"wp:attachment":[{"href":"https:\/\/rarediseasemalaysia.com\/ms\/wp-json\/wp\/v2\/media?parent=1612"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}