{"id":1,"date":"2020-12-16T21:58:28","date_gmt":"2020-12-16T19:58:28","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=1"},"modified":"2025-03-11T12:20:52","modified_gmt":"2025-03-11T10:20:52","slug":"livestreaming-o-rijetkim-metabolickim-bolestima","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/livestreaming-o-rijetkim-metabolickim-bolestima\/","title":{"rendered":"Livestreaming o rijetkim metaboli\u010dkim bolestima"},"content":{"rendered":"<h6 class=\"wp-block-heading\"><strong>U subotu, 10.10.2020. godine, odr\u017ean Livestreaming o rijetkim metaboli\u010dkim bolestima<\/strong>.<\/h6>\n\n\n\n<p>Program Livestreaminga obuhvatio je osam va\u017enih tema, Europske referentne mre\u017ee i nacionalne strategije, novi nacionalni program za rijetke bolesti, dijagnosticiranje i lije\u010denje rijetkih metaboli\u010dkih bolesti u referentnom centru, lije\u010denje rijetkih metaboli\u010dkih bolesti izvan referentnog centra, multidisciplinarna zdravstvena skrb pacijenata s rijetkim metaboli\u010dkim bolestima, anga\u017eman pacijenata s rijetkim metaboli\u010dkim bolestima, primanje terapije kod ku\u0107e i \u017eivot s rijetkom metaboli\u010dkom bolesti.<\/p>\n\n\n\n<p>Kako se na europskoj razini sve vi\u0161e govori o Europskim referentnim mre\u017eama i potrebi da se iste implementira u Nacionalne strategije i programe temu su otvorile predstavnice Ministarstva zdravstva i Hrvatskog saveza za rijetke bolesti. Otvorila se rasprava i o novom Nacionalnom programu za rijetke bolesti. Predstavnici referentnih centara za rijetke metaboli\u010dke bolesti pri\u010dali su o dijagnostici i lije\u010denju rijetkih metaboli\u010dkih bolesti s vremenskim odmakom. Kako bi se pri\u010dalo o napretku u lije\u010denju rijetkih metaboli\u010dkih bolesti pripremljena je i tema u kojoj su sudjelovale lije\u010dnice iz Osijeka i Splita. Osim dijagnostike i lije\u010denje razgovaralo se i o multidisciplinarnoj skrbi i pristupu rijetkim metaboli\u010dkim bolestima, gdje su pokrivene teme fizioterapije, psiholo\u0161kog i socijalnog aspekta rijetkih metaboli\u010dkih bolesti. Otvorila se tema primanja terapije kod ku\u0107e. Svoj doprinos programu dali su i sami pacijenti i roditelji djece oboljele od &nbsp;rijetkih metaboli\u010dkih bolesti, koji su pri\u010dali o anga\u017emanu pacijenata i udruga, ali i o svakodnevnom \u017eivotu s rijetkom metaboli\u010dkom bolesti.<\/p>\n\n\n\n<p>Cijeli sadr\u017eaj mo\u017eete pogledati na linku\u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=OUuMu-Hekk0\">Livestreaming o rijetkim metaboli\u010dkim bolestima<\/a><\/p>\n\n\n\n<p><\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter\"><img decoding=\"async\" src=\"http:\/\/www.rijetke-bolesti.hr\/wp-content\/uploads\/2020\/10\/1.jpeg\" alt=\"\"\/><figcaption>g\u0111a Vlasta Zmazek, Hrvatski savez za rijetke bolesti i g\u0111a Dunja Skoko-Poljak, Ministarstvo zdravstva<\/figcaption><\/figure><\/div>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter\"><img decoding=\"async\" src=\"http:\/\/www.rijetke-bolesti.hr\/wp-content\/uploads\/2020\/10\/2.jpeg\" alt=\"\"\/><figcaption>Prim. Sini\u0161a Varga, dr. med. dent. spec., biv\u0161i ministar zdravstva i prof. dr. sc. Fran Borove\u010dki, predstojnik Centra za translacijska i klini\u010dka istra\u017eivanja<\/figcaption><\/figure><\/div>\n\n\n\n<p><a href=\"http:\/\/www.rijetke-bolesti.hr\/livestreaming-o-rijetkim-metabolickim-bolestima\/1-4\/\"><\/a><\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter\"><img decoding=\"async\" src=\"http:\/\/www.rijetke-bolesti.hr\/wp-content\/uploads\/2020\/10\/3.jpeg\" alt=\"\"\/><figcaption>Prof.dr.sc. Ksenija Fumi\u0107, Odjel za laboratorijsku dijagnostiku nasljednih metaboli\u010dkih bolesti i novoro\u0111ena\u010dki probir i prof.dr.sc. Ivo Bari\u0107, Zavod za medicinsku genetiku i bolesti metabolizma <\/figcaption><\/figure><\/div>\n\n\n\n<p><a href=\"http:\/\/www.rijetke-bolesti.hr\/livestreaming-o-rijetkim-metabolickim-bolestima\/2-3\/\"><\/a><\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter\"><img decoding=\"async\" src=\"http:\/\/www.rijetke-bolesti.hr\/wp-content\/uploads\/2020\/10\/4.jpeg\" alt=\"\"\/><figcaption>Prof. Kristina Selthofer Relati\u0107, specijalist interne medicine \u2013 kardiolog Zavod za bolesti srca i krvnih \u017eila, KBC Osijek i dr. Ivana \u010culo \u010cagalj, specijalistica pedijatrije, KBC Split, Klinike za dje\u010dje bolesti<\/figcaption><\/figure><\/div>\n\n\n\n<p><a href=\"http:\/\/www.rijetke-bolesti.hr\/livestreaming-o-rijetkim-metabolickim-bolestima\/3-3\/\"><\/a><\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter\"><img decoding=\"async\" src=\"http:\/\/www.rijetke-bolesti.hr\/wp-content\/uploads\/2020\/10\/5.jpeg\" alt=\"\"\/><figcaption>Jadranka Brozd, bacc. physioth., dr.sc. Marina Grubi\u0107, prof. psihologije i Nikolina \u010covi\u0107, dipl.soc. rada<\/figcaption><\/figure><\/div>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter\"><img decoding=\"async\" src=\"http:\/\/www.rijetke-bolesti.hr\/wp-content\/uploads\/2020\/10\/6.jpeg\" alt=\"\"\/><figcaption>Doc.dr.sc. Sanja Peri\u0107, Udruga za pomo\u0107 obiteljima s fenilketonurijom i prof.dr.sc. Jasenka Wagner Kostadinovi\u0107, Hrvatska udruga oboljelih od Gaucherove bolesti<\/figcaption><\/figure><\/div>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter\"><img decoding=\"async\" src=\"http:\/\/www.rijetke-bolesti.hr\/wp-content\/uploads\/2020\/10\/7.jpeg\" alt=\"\"\/><figcaption>Sandra Delgado Sanchez, MHS Medical Home Service GmbH<\/figcaption><\/figure><\/div>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter\"><img decoding=\"async\" src=\"http:\/\/www.rijetke-bolesti.hr\/wp-content\/uploads\/2020\/10\/8.jpeg\" alt=\"\"\/><figcaption>Marina Fischer \u2013 MPS 1, Ivana Linde \u2013 Fabryeva bolest, Diana Taka\u010d \u2013 Niemann-Pick AB, Katarina Ba\u0161i\u0107 \u2013 Glikogenoza tip 1b<\/figcaption><\/figure><\/div>\n\n\n\n<p><a href=\"http:\/\/www.rijetke-bolesti.hr\/livestreaming-o-rijetkim-metabolickim-bolestima\/attachment\/4\/\"><\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>U subotu, 10.10.2020. godine, odr\u017ean Livestreaming o rijetkim metaboli\u010dkim bolestima. Program Livestreaminga obuhvatio je osam va\u017enih tema, Europske referentne mre\u017ee i nacionalne strategije, novi nacionalni program za rijetke bolesti, dijagnosticiranje i lije\u010denje rijetkih metaboli\u010dkih bolesti u referentnom centru, lije\u010denje rijetkih metaboli\u010dkih bolesti izvan referentnog centra,&#8230;<\/p>","protected":false},"author":1,"featured_media":790,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"content-type":"","footnotes":""},"categories":[1,5],"tags":[],"class_list":["post-1","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","category-media"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Livestreaming o rijetkim metaboli\u010dkim bolestima - Hrvatski savez za rijetke bolesti<\/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:\/\/rijetke-bolesti.com\/en\/livestreaming-o-rijetkim-metabolickim-bolestima\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Livestreaming o rijetkim metaboli\u010dkim bolestima - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"U subotu, 10.10.2020. godine, odr\u017ean Livestreaming o rijetkim metaboli\u010dkim bolestima. Program Livestreaminga obuhvatio je osam va\u017enih tema, Europske referentne mre\u017ee i nacionalne strategije, novi nacionalni program za rijetke bolesti, dijagnosticiranje i lije\u010denje rijetkih metaboli\u010dkih bolesti u referentnom centru, lije\u010denje rijetkih metaboli\u010dkih bolesti izvan referentnog centra,...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/rijetke-bolesti.com\/en\/livestreaming-o-rijetkim-metabolickim-bolestima\/\" \/>\n<meta property=\"og:site_name\" content=\"Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"article:published_time\" content=\"2020-12-16T19:58:28+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-03-11T10:20:52+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2020\/12\/8.jpeg\" \/>\n\t<meta property=\"og:image:width\" content=\"640\" \/>\n\t<meta property=\"og:image:height\" content=\"427\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\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=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/rijetke-bolesti.com\/livestreaming-o-rijetkim-metabolickim-bolestima\/\",\"url\":\"https:\/\/rijetke-bolesti.com\/livestreaming-o-rijetkim-metabolickim-bolestima\/\",\"name\":\"Livestreaming o rijetkim metaboli\u010dkim bolestima - 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