{"id":160405,"date":"2023-02-28T09:57:22","date_gmt":"2023-02-28T08:57:22","guid":{"rendered":"https:\/\/novice.si\/page\/?p=160405"},"modified":"2023-02-28T09:57:22","modified_gmt":"2023-02-28T08:57:22","slug":"sentjur-poziv-drustva-vl-k-zagotovitvi-otroske-paliative","status":"publish","type":"post","link":"https:\/\/novice.si\/page\/sentjur-poziv-drustva-vl-k-zagotovitvi-otroske-paliative\/","title":{"rendered":"\u0160ENTJUR Poziv dru\u0161tva VL k zagotovitvi otro\u0161ke paliative"},"content":{"rendered":"<p>Ob dana\u0161njem svetovnem dnevu redkih bolezni so v \u0161entjurskem dru\u0161tvu Viljem Julijan pozvali pristojne in\u0161titucije k ureditvi in zagotovitvi otro\u0161ke paliativne oskrbe na domu. Zaradi psihi\u010dne in fizi\u010dne zahtevnosti oskrbe otrok z redkimi boleznimi pri star\u0161ih prihaja do <a href=\"https:\/\/novice.si\/page\/wp-content\/uploads\/2023\/02\/redke-bolezni.png\" data-gallery><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-160411 alignleft\" src=\"https:\/\/novice.si\/page\/wp-content\/uploads\/2023\/02\/redke-bolezni-300x157.png\" alt=\"\" width=\"300\" height=\"157\" srcset=\"https:\/\/novice.si\/page\/wp-content\/uploads\/2023\/02\/redke-bolezni-300x157.png 300w, https:\/\/novice.si\/page\/wp-content\/uploads\/2023\/02\/redke-bolezni-24x13.png 24w, https:\/\/novice.si\/page\/wp-content\/uploads\/2023\/02\/redke-bolezni-36x19.png 36w, https:\/\/novice.si\/page\/wp-content\/uploads\/2023\/02\/redke-bolezni-48x25.png 48w, https:\/\/novice.si\/page\/wp-content\/uploads\/2023\/02\/redke-bolezni.png 310w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a>izgorelosti, saj pove\u010dini nimajo mo\u017enosti, da bi vsaj za nekaj ur tedensko oskrbo prevzela usposobljena oseba. V na\u0161i dr\u017eavi prav tako \u0161e nimamo nacionalnega registra redkih bolezni.<\/p>\n<p>Redke bolezni so najve\u010dkrat tudi neozdravljive in prizadenejo pribli\u017eno pet ljudi (v 75 odstotkih so to otroci) na 10.000 prebivalcev. So genetskega izvora in vplivajo na fizi\u010dne, du\u0161evne in senzori\u010dne sposobnosti, povzro\u010dijo invalidnost, tretjina obolelih otrok ne do\u010daka petega leta starosti. Za 95 odstotkov teh bolezni, ki jih je \u017ee okoli 6000, ni zdravila, z ustrezno nego pa se bolnikom lahko podalj\u0161a pri\u010dakovana \u017eivljenjska doba.<\/p>\n<p>P\u0160<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Ob dana\u0161njem svetovnem dnevu redkih bolezni so v \u0161entjurskem dru\u0161tvu Viljem Julijan pozvali pristojne in\u0161titucije k ureditvi in zagotovitvi otro\u0161ke paliativne oskrbe na domu. Zaradi psihi\u010dne in fizi\u010dne zahtevnosti oskrbe otrok z redkimi boleznimi pri star\u0161ih prihaja do izgorelosti, saj pove\u010dini nimajo mo\u017enosti, da bi vsaj za nekaj ur tedensko oskrbo prevzela usposobljena oseba. V [&hellip;]<\/p>\n","protected":false},"author":33,"featured_media":160412,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[57],"tags":[17154,17207,5087,11782],"class_list":["post-160405","post","type-post","status-publish","format-standard","has-post-thumbnail","category-sentjursko","tag-drustvo-viljem-julijan","tag-paliativna-oskrb-otrok","tag-poziv","tag-svetovni-dan-redkih-bolezni"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>\u0160ENTJUR Poziv dru\u0161tva VL k zagotovitvi otro\u0161ke paliative - Novice.si<\/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:\/\/novice.si\/page\/sentjur-poziv-drustva-vl-k-zagotovitvi-otroske-paliative\/\" \/>\n<meta property=\"og:locale\" content=\"sl_SI\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u0160ENTJUR Poziv dru\u0161tva VL k zagotovitvi otro\u0161ke paliative - Novice.si\" \/>\n<meta property=\"og:description\" content=\"Ob dana\u0161njem svetovnem dnevu redkih bolezni so v \u0161entjurskem dru\u0161tvu Viljem Julijan pozvali pristojne in\u0161titucije k ureditvi in zagotovitvi otro\u0161ke paliativne oskrbe na domu. Zaradi psihi\u010dne in fizi\u010dne zahtevnosti oskrbe otrok z redkimi boleznimi pri star\u0161ih prihaja do izgorelosti, saj pove\u010dini nimajo mo\u017enosti, da bi vsaj za nekaj ur tedensko oskrbo prevzela usposobljena oseba. 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