{"id":138,"date":"2019-03-25T14:49:44","date_gmt":"2019-03-25T12:49:44","guid":{"rendered":"https:\/\/cdn.jevelin.shufflehound.com\/digital-media-agency\/?p=138"},"modified":"2021-07-08T17:11:15","modified_gmt":"2021-07-08T15:11:15","slug":"zagrebacke-fontane-sinoc-u-zelenoj-boji","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/zagrebacke-fontane-sinoc-u-zelenoj-boji\/","title":{"rendered":"Zagreba\u010dke fontane sino\u0107 u zelenoj boji"},"content":{"rendered":"<h6 class=\"has-normal-font-size wp-block-heading\">Na inicijativu na\u0161e udruge \u010dlanice, GENOM, ove godine po prvi puta u Hrvatskoj, 22.10. obilje\u017eio se Me\u0111unarodni dan Phelan McDermid sindroma.<\/h6>\n\n\n\n<p>Phelan McDermid sindrom je rijedak genetski poreme\u0107aj koji nastaje u za\u010de\u0107u, a podrazumijeva nestanak zna\u010dajnog broja gena na 22 kromosomu.<br>Posljedice su vi\u0161estruka o\u0161te\u0107enja zdravlja, od sni\u017eenog mi\u0161i\u0107nog tonusa, nerazvijenog govora, umjerenih do te\u0161kih intelektualnih te\u0161ko\u0107a, poreme\u0107aj autisti\u010dnog spektra, limfedeme, gastro refluksa, epilepsija, naru\u0161ene termoregulacije tijela te mnoga druga te\u0161ka stanja.<br>Kao i kod drugih rijetkih bolesti, najve\u0107i izazovi s kojma se roditelji susre\u0107u jesu rana dijagnostika, rana intervencija i na\u017ealost,\u00a0regresija nau\u010denih vje\u0161tina tijekom \u017eivota.<br>Unato\u010d svim dostupnim metodama rehabilitacije i rane intervencije, ne posti\u017eu samostalnost u osnovnim \u017eivotnim aktivnostima te im je potrebna podr\u0161ka i u odrasloj dobi \u017eivota.\u00a0U svijetu je prema dostupnim informacijama iz slu\u017ebenog registra Phelan McDermid\u00a0Foundation upisano 2543 osoba, dok Hrvatska bilje\u017ei 12 obitelji. Dio njih su \u010dlanovi udruge\u00a0GENOM kao i Hrvatskog Saveza za rijetke bolesti.U ime Grada Zagreba podr\u0161ku obiteljima ju\u010der je dao pro\u010delnik Gradskog ureda za zdravstvo, dr.sc. Vjekoslav Jele\u010d.<\/p>","protected":false},"excerpt":{"rendered":"<p>Na inicijativu na\u0161e udruge \u010dlanice, GENOM, ove godine po prvi puta u Hrvatskoj, 22.10. obilje\u017eio se Me\u0111unarodni dan Phelan McDermid sindroma. Phelan McDermid sindrom je rijedak genetski poreme\u0107aj koji nastaje u za\u010de\u0107u, a podrazumijeva nestanak zna\u010dajnog broja gena na 22 kromosomu.Posljedice su vi\u0161estruka o\u0161te\u0107enja zdravlja,&#8230;<\/p>","protected":false},"author":1,"featured_media":809,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"content-type":"","footnotes":""},"categories":[2],"tags":[],"class_list":["post-138","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-usluge"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Zagreba\u010dke fontane sino\u0107 u zelenoj boji - 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\/zagrebacke-fontane-sinoc-u-zelenoj-boji\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Zagreba\u010dke fontane sino\u0107 u zelenoj boji - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"Na inicijativu na\u0161e udruge \u010dlanice, GENOM, ove godine po prvi puta u Hrvatskoj, 22.10. obilje\u017eio se Me\u0111unarodni dan Phelan McDermid sindroma. Phelan McDermid sindrom je rijedak genetski poreme\u0107aj koji nastaje u za\u010de\u0107u, a podrazumijeva nestanak zna\u010dajnog broja gena na 22 kromosomu.Posljedice su vi\u0161estruka o\u0161te\u0107enja zdravlja,...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/rijetke-bolesti.com\/en\/zagrebacke-fontane-sinoc-u-zelenoj-boji\/\" \/>\n<meta property=\"og:site_name\" content=\"Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"article:published_time\" content=\"2019-03-25T12:49:44+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2021-07-08T15:11:15+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2019\/03\/fontane1.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1024\" \/>\n\t<meta property=\"og:image:height\" content=\"768\" \/>\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=\"1 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/rijetke-bolesti.com\/zagrebacke-fontane-sinoc-u-zelenoj-boji\/\",\"url\":\"https:\/\/rijetke-bolesti.com\/zagrebacke-fontane-sinoc-u-zelenoj-boji\/\",\"name\":\"Zagreba\u010dke fontane sino\u0107 u zelenoj boji - 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