{"id":8905,"date":"2022-04-06T16:59:00","date_gmt":"2022-04-06T13:59:00","guid":{"rendered":"https:\/\/uaps.org.ua\/support-of-children-with-rare-disease-during-the-war\/"},"modified":"2022-04-11T11:13:03","modified_gmt":"2022-04-11T08:13:03","slug":"support-of-children-with-rare-disease-during-the-war","status":"publish","type":"post","link":"https:\/\/uaps.org.ua\/en\/support-of-children-with-rare-disease-during-the-war\/","title":{"rendered":"Support of&nbsp;children with rare disease during the&nbsp;war"},"content":{"rendered":"<style>#kt-layout-id_340b9d-d1{margin-bottom:75px;}#kt-layout-id_340b9d-d1 > .kt-row-column-wrap{align-content:start;}:where(#kt-layout-id_340b9d-d1 > .kt-row-column-wrap) > .wp-block-kadence-column{justify-content:start;}#kt-layout-id_340b9d-d1 > .kt-row-column-wrap{column-gap:var(--global-kb-gap-none, 0rem );row-gap:var(--global-kb-gap-none, 0rem );max-width:814px;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:80px;padding-bottom:80px;padding-left:0px;padding-right:0px;grid-template-columns:minmax(0, 1fr);}#kt-layout-id_340b9d-d1{background-image:url('https:\/\/uaps.org.ua\/wp-content\/uploads\/2022\/04\/ukrainian-teenage-boy-war-refugee-in-temporary-shelter-and-help-center.jpg');background-size:cover;background-position:51% 51%;background-attachment:scroll;background-repeat:no-repeat;}#kt-layout-id_340b9d-d1 > .kt-row-layout-overlay{opacity:0.77;background-image:linear-gradient(90deg, var(--global-palette8, #F7FAFC) 42%, rgba(255, 255, 255, 0.74) 100%);}@media all and (max-width: 1024px){#kt-layout-id_340b9d-d1 > .kt-row-column-wrap{grid-template-columns:minmax(0, 1fr);}}@media all and (max-width: 767px){#kt-layout-id_340b9d-d1 > .kt-row-column-wrap{padding-top:60px;padding-bottom:60px;padding-left:0px;padding-right:0px;grid-template-columns:minmax(0, 1fr);}}<\/style>\n<div class=\"wp-block-kadence-rowlayout alignfull\"><div id=\"kt-layout-id_340b9d-d1\" class=\"kt-row-layout-inner kt-row-has-bg kt-layout-id_340b9d-d1 has-theme-palette-8-background-color\"><div class=\"kt-row-layout-overlay kt-row-overlay-gradient\"><\/div><div class=\"kt-row-column-wrap kt-has-1-columns kt-gutter-none kt-v-gutter-none 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_735ba1-93 > .kt-inside-inner-col{padding-top:10px;padding-bottom:10px;padding-left:10px;padding-right:10px;}.kadence-column_735ba1-93 > .kt-inside-inner-col{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_735ba1-93 > .kt-inside-inner-col,.kadence-column_735ba1-93 > .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_735ba1-93 > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_735ba1-93 > .kt-inside-inner-col{flex-direction:column;}.kadence-column_735ba1-93 > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_735ba1-93 > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_735ba1-93{position:relative;}@media all and (max-width: 1024px){.kadence-column_735ba1-93 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_735ba1-93 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-1 kadence-column_735ba1-93\"><div class=\"kt-inside-inner-col\"><style>.wp-block-kadence-advancedheading.kt-adv-heading_254257-31, .wp-block-kadence-advancedheading.kt-adv-heading_254257-31[data-kb-block=\"kb-adv-heading_254257-31\"]{margin-bottom:27px;text-align:center;font-size:14px;line-height:14px;font-weight:600;font-style:normal;}.wp-block-kadence-advancedheading.kt-adv-heading_254257-31 mark.kt-highlight, .wp-block-kadence-advancedheading.kt-adv-heading_254257-31[data-kb-block=\"kb-adv-heading_254257-31\"] mark.kt-highlight{font-style:normal;color:#f76a0c;-webkit-box-decoration-break:clone;box-decoration-break:clone;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;}.wp-block-kadence-advancedheading.kt-adv-heading_254257-31 img.kb-inline-image, .wp-block-kadence-advancedheading.kt-adv-heading_254257-31[data-kb-block=\"kb-adv-heading_254257-31\"] img.kb-inline-image{width:150px;vertical-align:baseline;}@media all and (max-width: 1024px){.wp-block-kadence-advancedheading.kt-adv-heading_254257-31, .wp-block-kadence-advancedheading.kt-adv-heading_254257-31[data-kb-block=\"kb-adv-heading_254257-31\"]{text-align:center!important;}}@media all and (max-width: 767px){.wp-block-kadence-advancedheading.kt-adv-heading_254257-31, .wp-block-kadence-advancedheading.kt-adv-heading_254257-31[data-kb-block=\"kb-adv-heading_254257-31\"]{text-align:center!important;}}<\/style>\n<h6 class=\"kt-adv-heading_254257-31 wp-block-kadence-advancedheading\" data-kb-block=\"kb-adv-heading_254257-31\">news<\/h6>\n\n\n<style>.wp-block-kadence-advancedheading.kt-adv-heading_dc0067-fc, .wp-block-kadence-advancedheading.kt-adv-heading_dc0067-fc[data-kb-block=\"kb-adv-heading_dc0067-fc\"]{text-align:center;font-size:42px;line-height:52px;font-weight:700;font-style:normal;}.wp-block-kadence-advancedheading.kt-adv-heading_dc0067-fc mark.kt-highlight, .wp-block-kadence-advancedheading.kt-adv-heading_dc0067-fc[data-kb-block=\"kb-adv-heading_dc0067-fc\"] mark.kt-highlight{font-weight:normal;font-style:normal;color:#f76a0c;-webkit-box-decoration-break:clone;box-decoration-break:clone;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;}.wp-block-kadence-advancedheading.kt-adv-heading_dc0067-fc img.kb-inline-image, .wp-block-kadence-advancedheading.kt-adv-heading_dc0067-fc[data-kb-block=\"kb-adv-heading_dc0067-fc\"] img.kb-inline-image{width:150px;vertical-align:baseline;}@media all and (max-width: 1024px){.wp-block-kadence-advancedheading.kt-adv-heading_dc0067-fc, .wp-block-kadence-advancedheading.kt-adv-heading_dc0067-fc[data-kb-block=\"kb-adv-heading_dc0067-fc\"]{text-align:center!important;}}@media all and (max-width: 767px){.wp-block-kadence-advancedheading.kt-adv-heading_dc0067-fc, .wp-block-kadence-advancedheading.kt-adv-heading_dc0067-fc[data-kb-block=\"kb-adv-heading_dc0067-fc\"]{font-size:26px;line-height:40px;text-align:center!important;}}<\/style>\n<h1 class=\"kt-adv-heading_dc0067-fc wp-block-kadence-advancedheading has-theme-palette-3-color has-text-color\" data-kb-block=\"kb-adv-heading_dc0067-fc\">Support of&nbsp;children with rare disease during the&nbsp;war<\/h1>\n<\/div><\/div>\n<\/div><\/div><\/div>\n\n\n\n<p>Since the beginning of&nbsp;Russia&#8217;s war against Ukraine on&nbsp;February&nbsp;24, 2022, the&nbsp;usual peaceful life has&nbsp;remained only in&nbsp;the&nbsp;memories, all&nbsp;the&nbsp;plans and&nbsp;dreams of&nbsp;every Ukrainian were destroyed almost in&nbsp;an&nbsp;instant. In&nbsp;addition to&nbsp;missile strikes, aerial bombs and&nbsp;enemy bullets, the&nbsp;beginning of&nbsp;the&nbsp;war posed an&nbsp;additional threat to&nbsp;sick children. A&nbsp;special group of&nbsp;such patients are&nbsp;those whose diseases are&nbsp;among the&nbsp;orphan&nbsp;(rare) diseases. For&nbsp;them, there&nbsp;are no&nbsp;opportunities to&nbsp;replace drugs, drugs are high-priced, and&nbsp;access to&nbsp;them has&nbsp;always&nbsp;been limited \u2013 it\u2019s impossible to&nbsp;find in&nbsp;ordinary pharmacies. It\u2019s no&nbsp;secret that the&nbsp;key to&nbsp;quality treatment of&nbsp;children with rare diseases is&nbsp;the&nbsp;rule not&nbsp;only of&nbsp;just timely started treatment, but&nbsp;also compliance with its continuity and&nbsp;correct dosage regimen. <\/p>\n\n\n\n<p>In extreme conditions, when the&nbsp;situation changes hourly, the&nbsp;doctor has&nbsp;to&nbsp;use not&nbsp;only knowledge of&nbsp;the&nbsp;treatment of&nbsp;such diseases, but&nbsp;also to&nbsp;act as&nbsp;a&nbsp;coordinating physician. Communication with patients goes to&nbsp;a&nbsp;qualitatively different level. The&nbsp;doctor needs not&nbsp;only to&nbsp;listen and&nbsp;provide psychological support, but&nbsp;also to&nbsp;orientate in&nbsp;the&nbsp;psychological state of&nbsp;the&nbsp;patient and&nbsp;his parents, identify existing problems and&nbsp;needs, coordinate the&nbsp;possibility of&nbsp;continuing treatment not&nbsp;only in&nbsp;Ukraine but&nbsp;also abroad.<\/p>\n\n\n<style>#kt-layout-id_a3d63f-2e > .kt-row-column-wrap{align-content:start;}:where(#kt-layout-id_a3d63f-2e > .kt-row-column-wrap) > .wp-block-kadence-column{justify-content:start;}#kt-layout-id_a3d63f-2e > .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:var(--global-kb-spacing-sm, 1.5rem);padding-bottom:var(--global-kb-spacing-sm, 1.5rem);grid-template-columns:repeat(2, minmax(0, 1fr));}#kt-layout-id_a3d63f-2e > .kt-row-layout-overlay{opacity:0.30;}@media all and (max-width: 1024px){#kt-layout-id_a3d63f-2e > .kt-row-column-wrap{grid-template-columns:repeat(2, minmax(0, 1fr));}}@media all and (max-width: 767px){#kt-layout-id_a3d63f-2e > .kt-row-column-wrap{grid-template-columns:minmax(0, 1fr);}}<\/style>\n<div class=\"wp-block-kadence-rowlayout alignnone\"><div id=\"kt-layout-id_a3d63f-2e\" class=\"kt-row-layout-inner kt-layout-id_a3d63f-2e\"><div class=\"kt-row-column-wrap kt-has-2-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_df08cc-f5 > .kt-inside-inner-col{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_df08cc-f5 > .kt-inside-inner-col,.kadence-column_df08cc-f5 > .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_df08cc-f5 > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_df08cc-f5 > .kt-inside-inner-col{flex-direction:column;}.kadence-column_df08cc-f5 > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_df08cc-f5 > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_df08cc-f5{position:relative;}@media all and (max-width: 1024px){.kadence-column_df08cc-f5 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_df08cc-f5 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-1 kadence-column_df08cc-f5\"><div class=\"kt-inside-inner-col\">\n<p>One of such coordinators was&nbsp;Natalia Samonenko, head of&nbsp;the&nbsp;Committee for&nbsp;Rare Diseases of&nbsp;the&nbsp;Ukrainian Academy of&nbsp;Pediatric Specialties, head of&nbsp;the&nbsp;advisory department of&nbsp;the&nbsp;Center for&nbsp;Orphan Diseases &#8220;Okhmatdyt hospital&#8221;. Remote communication with patients, clarification of&nbsp;their location, redistribution and&nbsp;movement of&nbsp;medicines for&nbsp;the&nbsp;treatment of&nbsp;patients with orphan illness, communication with doctors who have never worked with such patients, referral of&nbsp;patients to&nbsp;medical centers around the&nbsp;world, Formation of&nbsp;needs for&nbsp;medicines and&nbsp;the&nbsp;organization of&nbsp;humanitarian and&nbsp;this is&nbsp;hardly a&nbsp;complete list of&nbsp;what Mrs.&nbsp;Natalia&#8217;s day is&nbsp;filled with today.<\/p>\n<\/div><\/div>\n\n\n<style>.kadence-column_876576-e7 > .kt-inside-inner-col{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_876576-e7 > .kt-inside-inner-col,.kadence-column_876576-e7 > .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_876576-e7 > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_876576-e7 > .kt-inside-inner-col{flex-direction:column;}.kadence-column_876576-e7 > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_876576-e7 > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_876576-e7{position:relative;}@media all and (max-width: 1024px){.kadence-column_876576-e7 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_876576-e7 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-2 kadence-column_876576-e7\"><div class=\"kt-inside-inner-col\"><style>.kb-image_ebe191-3c .kb-image-has-overlay:after{opacity:0.3;}<\/style>\n<figure class=\"wp-block-kadence-image kb-image_ebe191-3c size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"576\" height=\"1024\" src=\"https:\/\/uaps.org.ua\/wp-content\/uploads\/2022\/04\/samonenko-576x1024.jpg\" alt=\"\" class=\"kb-img wp-image-8899\" srcset=\"https:\/\/uaps.org.ua\/wp-content\/uploads\/2022\/04\/samonenko-576x1024.jpg 576w, https:\/\/uaps.org.ua\/wp-content\/uploads\/2022\/04\/samonenko-169x300.jpg 169w, https:\/\/uaps.org.ua\/wp-content\/uploads\/2022\/04\/samonenko-768x1365.jpg 768w, https:\/\/uaps.org.ua\/wp-content\/uploads\/2022\/04\/samonenko-864x1536.jpg 864w, https:\/\/uaps.org.ua\/wp-content\/uploads\/2022\/04\/samonenko.jpg 900w\" sizes=\"auto, (max-width: 576px) 100vw, 576px\" \/><\/figure>\n<\/div><\/div>\n<\/div><\/div><\/div>\n\n\n\n<p>&#8220;Of course, we\u00a0are not\u00a0alone with our problems. Therefore, we would like to\u00a0express our support and\u00a0great gratitude to\u00a0the\u00a0patient organizations, in\u00a0particular the\u00a0NGO\u00a0&#8220;Orphan Diseases of\u00a0Ukraine&#8221;, our colleagues from the\u00a0European Academy of\u00a0Pediatrics\u00a0(EAP), colleagues from the\u00a0European Reference Networks\u00a0(ERN). Many doctors have joined in\u00a0helping patients with orphan pathology in\u00a0Ukraine or\u00a0abroad. Our struggle for\u00a0our country still goes\u00a0on. Our work is\u00a0becoming more coordinated and\u00a0therefore more efficient. We\u00a0are\u00a0waiting for\u00a0the\u00a0return of\u00a0all our children to\u00a0their Motherland, which means that there are still hard times lie ahead and a\u00a0lot of\u00a0sleepless nights&#8221; \u2013 said Natalia Samonenko.<\/p>\n\n\n<style>.kb-image_c907da-44 .kb-image-has-overlay:after{opacity:0.3;}<\/style>\n<figure class=\"wp-block-kadence-image kb-image_c907da-44 size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"768\" src=\"https:\/\/uaps.org.ua\/wp-content\/uploads\/2022\/04\/samonenko-2-1024x768.jpg\" alt=\"\" class=\"kb-img wp-image-8947\" srcset=\"https:\/\/uaps.org.ua\/wp-content\/uploads\/2022\/04\/samonenko-2-1024x768.jpg 1024w, https:\/\/uaps.org.ua\/wp-content\/uploads\/2022\/04\/samonenko-2-300x225.jpg 300w, https:\/\/uaps.org.ua\/wp-content\/uploads\/2022\/04\/samonenko-2-768x576.jpg 768w, https:\/\/uaps.org.ua\/wp-content\/uploads\/2022\/04\/samonenko-2.jpg 1280w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>news Support of&nbsp;children with rare disease during the&nbsp;war Since the beginning of&nbsp;Russia&#8217;s war against Ukraine on&nbsp;February&nbsp;24, 2022, the&nbsp;usual peaceful life has&nbsp;remained only in&nbsp;the&nbsp;memories, all&nbsp;the&nbsp;plans and&nbsp;dreams&#8230;<\/p>\n","protected":false},"author":1,"featured_media":8895,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_kad_blocks_custom_css":"","_kad_blocks_head_custom_js":"","_kad_blocks_body_custom_js":"","_kad_blocks_footer_custom_js":"","_kadence_starter_templates_imported_post":false,"_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":""},"categories":[39],"tags":[],"class_list":["post-8905","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news-en"],"acf":[],"taxonomy_info":{"category":[{"value":39,"label":"News"}]},"featured_image_src_large":["https:\/\/uaps.org.ua\/wp-content\/uploads\/2022\/04\/ukrainian-teenage-boy-war-refugee-in-temporary-shelter-and-help-center-1024x682.jpg",1024,682,true],"author_info":{"display_name":"uaps.media@gmail.com","author_link":"https:\/\/uaps.org.ua\/en\/author\/uaps-mediagmail-com-2\/"},"comment_info":0,"category_info":[{"term_id":39,"name":"News","slug":"news-en","term_group":0,"term_taxonomy_id":39,"taxonomy":"category","description":"","parent":0,"count":13,"filter":"raw","term_order":"0","cat_ID":39,"category_count":13,"category_description":"","cat_name":"News","category_nicename":"news-en","category_parent":0}],"tag_info":false,"_links":{"self":[{"href":"https:\/\/uaps.org.ua\/en\/wp-json\/wp\/v2\/posts\/8905","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/uaps.org.ua\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/uaps.org.ua\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/uaps.org.ua\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/uaps.org.ua\/en\/wp-json\/wp\/v2\/comments?post=8905"}],"version-history":[{"count":7,"href":"https:\/\/uaps.org.ua\/en\/wp-json\/wp\/v2\/posts\/8905\/revisions"}],"predecessor-version":[{"id":8949,"href":"https:\/\/uaps.org.ua\/en\/wp-json\/wp\/v2\/posts\/8905\/revisions\/8949"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/uaps.org.ua\/en\/wp-json\/wp\/v2\/media\/8895"}],"wp:attachment":[{"href":"https:\/\/uaps.org.ua\/en\/wp-json\/wp\/v2\/media?parent=8905"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/uaps.org.ua\/en\/wp-json\/wp\/v2\/categories?post=8905"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/uaps.org.ua\/en\/wp-json\/wp\/v2\/tags?post=8905"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}