{"id":21170,"date":"2025-08-29T09:02:15","date_gmt":"2025-08-29T07:02:15","guid":{"rendered":"http:\/\/www.drustvo-distrofikov.si\/?p=21170"},"modified":"2025-08-29T09:02:15","modified_gmt":"2025-08-29T07:02:15","slug":"sporocilo-za-javnost-po-usklajevalnem-posvetovanju-invalidskih-organizacij-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-2-2-2-2-2-3-3-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-3-2-2-2-128","status":"publish","type":"post","link":"http:\/\/www.drustvo-distrofikov.si\/?p=21170","title":{"rendered":"Pogovor &#8220;Skupaj z dru\u017eino je pot la\u017eja&#8221;."},"content":{"rendered":"<p><strong>STAklub<\/strong> Slovenske tiskovne agencije pred svetovnim dnevom Duchennove mi\u0161i\u010dne distrofije vabi na pogovor z naslovom <strong><em>&#8220;Skupaj z dru\u017eino je pot la\u017eja&#8221;<\/em><\/strong>.<\/p>\n<p>Dogodek\u00a0bo <strong>v sredo, 3. septembra 2025, ob 11. uri v dvorani Julija na Zdravni\u0161ki zbornici Slovenije<\/strong> (Dunajska cesta 162, Ljubljana).<\/p>\n<p>Pogovor bo mogo\u010de spremljati tudi prek neposrednega spletnega prenosa na <strong><a href=\"https:\/\/video.sta.si\/prenos\/svetovni-dan-duchennove-bolezni\">video.sta.si<\/a>,<\/strong> kjer bo po koncu na voljo tudi posnetek za kasnej\u0161i ogled.<\/p>\n<p>Duchennova mi\u0161i\u010dna distrofija je prirojena in neozdravljiva redka bolezen, za katero je zna\u010dilno napredujo\u010de propadanje mi\u0161ic. \u010ceprav redke bolezni prizadenejo manj\u0161e \u0161tevilo ljudi, imajo globok in dolgotrajen vpliv na \u017eivljenja bolnikov ter njihovih dru\u017ein. Ob diagnozi se dru\u017eina znajde pred medicinskimi, \u010dustvenimi in logisti\u010dnimi izzivi, pri katerih sta povezanost in sodelovanje klju\u010dni za vsakodnevno obvladovanje bolezni. V pogovoru o bolezni bomo zato tudi osvetlili, kako strokovnjaki in dru\u017eine skupaj i\u0161\u010dejo re\u0161itve ter kaj pomeni \u017eiveti z Duchennovo mi\u0161i\u010dno distrofijo.<\/p>\n<p>Sodelovali bodo:<\/p>\n<ul>\n<li>izr. prof. dr. <strong>Damjan Osredka<\/strong>r, dr. med, predstojnik Klini\u010dnega oddelka za otro\u0161ko, mladostni\u0161ko in razvojno nevrologijo na Pediatri\u010dni kliniki, UKC Ljubljana<\/li>\n<li>mag. <strong>Mateja Toman<\/strong>, predsednica Dru\u0161tva distrofikov Slovenije<\/li>\n<li>gospa <strong>Sanja Kogelnik<\/strong>, predsednica dru\u0161tva DMD Slovenija<\/li>\n<\/ul>\n<p>Pogovor bo vodila Sanja Gornjec, STA.<\/p>\n<p>Vljudno vabljeni k spremljanju!<\/p>\n<p><a href=\"https:\/\/video.sta.si\/prenos\/svetovni-dan-duchennove-bolezni\">video.sta.si\/prenos\/svetovni-dan-duchennove-bolezni<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>STAklub Slovenske tiskovne agencije pred svetovnim dnevom Duchennove mi\u0161i\u010dne distrofije vabi na pogovor z naslovom &#8220;Skupaj z dru\u017eino je pot la\u017eja&#8221;. Dogodek\u00a0bo v sredo, 3. septembra 2025, ob 11. uri v dvorani Julija na Zdravni\u0161ki zbornici Slovenije (Dunajska cesta 162, Ljubljana). Pogovor bo mogo\u010de spremljati&#8230;<\/p>\n","protected":false},"author":3,"featured_media":21171,"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-21170","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-novice"],"publishpress_future_action":{"enabled":false,"date":"2026-05-11 22:36:15","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\/21170","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=21170"}],"version-history":[{"count":1,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/21170\/revisions"}],"predecessor-version":[{"id":21172,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/21170\/revisions\/21172"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/media\/21171"}],"wp:attachment":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=21170"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=21170"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=21170"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}