{"id":20989,"date":"2025-02-28T13:58:45","date_gmt":"2025-02-28T12:58:45","guid":{"rendered":"http:\/\/www.drustvo-distrofikov.si\/?p=20989"},"modified":"2025-02-28T14:01:49","modified_gmt":"2025-02-28T13:01:49","slug":"sporocilo-za-javnost-po-usklajevalnem-posvetovanju-invalidskih-organizacij-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-2-2-2-2-2-3-3-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-3-2-2-2-107","status":"publish","type":"post","link":"http:\/\/www.drustvo-distrofikov.si\/?p=20989","title":{"rendered":"Zgodba Mojce Su\u0161ec o \u017eivljenju s SMA"},"content":{"rendered":"<p>Zgodba Mojce Su\u0161ec o \u017eivljenju s SMA<\/p>\n<p>Veseli nas, da ob Svetovnem dnevu redkih bolezni lahko predstavimo video \u2013 osebno zgodbo Mojce Su\u0161ec o \u017eivljenju s SMA<\/p>\n<p>Video si lahko ogledate <a href=\"https:\/\/youtu.be\/YXBmyzjgTos\">TUKAJ<\/a><\/p>\n<p>Pri dru\u0161tvu se iskreno zahvaljujemo Mojci Su\u0161ec, doc. dr. Bla\u017eu Koritniku, Darji \u0160ulc Tratar iz SiVita As EduCare d.o.o. in Anji Jurjec iz podjetja Roche za predanost, \u010das in trud, ki so ga vlo\u017eili v nastanek videa o \u017eivljenju s SMA. Posebna zahvala gre podjetju Roche, ki je s svojo finan\u010dno podporo omogo\u010dilo uresni\u010ditev tega projekta in na\u0161e \u017eelje, da \u0161ir\u0161i javnosti predstavimo pomembno zgodbo o \u017eivljenju z redkim obolenjem ob leto\u0161njem dnevu redkih bolezni.<\/p>\n<p>Video je pomemben korak k ve\u010dji ozave\u0161\u010denosti, razumevanju in sprejemanju mi\u0161i\u010dnih in \u017eiv\u010dno mi\u0161i\u010dnih obolenj. Verjamemo, da bo ta zgodba mnogim v navdih in spodbuda.<\/p>\n<p>Video je objavljen tudi na dru\u0161tveni <a href=\"https:\/\/www.facebook.com\/drustvodistrofikovslovenije\/\">FB strani<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Zgodba Mojce Su\u0161ec o \u017eivljenju s SMA Veseli nas, da ob Svetovnem dnevu redkih bolezni lahko predstavimo video \u2013 osebno zgodbo Mojce Su\u0161ec o \u017eivljenju s SMA Video si lahko ogledate TUKAJ Pri dru\u0161tvu se iskreno zahvaljujemo Mojci Su\u0161ec, doc. dr. Bla\u017eu Koritniku, Darji \u0160ulc&#8230;<\/p>\n","protected":false},"author":3,"featured_media":20990,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[187],"tags":[],"class_list":["post-20989","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-novice"],"publishpress_future_action":{"enabled":false,"date":"2026-05-29 17:02:26","action":"change-status","newStatus":"draft","terms":[],"taxonomy":"category","extraData":[]},"publishpress_future_workflow_manual_trigger":{"enabledWorkflows":[]},"_links":{"self":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/20989","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=20989"}],"version-history":[{"count":2,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/20989\/revisions"}],"predecessor-version":[{"id":20993,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/20989\/revisions\/20993"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/media\/20990"}],"wp:attachment":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=20989"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=20989"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=20989"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}