{"id":16501,"date":"2015-08-13T11:20:10","date_gmt":"2015-08-13T11:20:10","guid":{"rendered":"http:\/\/www.test1dds.si\/?p=16501"},"modified":"2015-08-13T11:20:26","modified_gmt":"2015-08-13T11:20:26","slug":"ustanovitev-zdruzenja-za-redke-bolezni-slovenije","status":"publish","type":"post","link":"http:\/\/www.drustvo-distrofikov.si\/?p=16501","title":{"rendered":"Ustanovitev Zdru\u017eenja za redke bolezni Slovenije"},"content":{"rendered":"<p>Dru\u0161tvo distrofikov Slovenije je s \u0161e petimi organizacijami, ki zdru\u017eujejo obolele z redkimi boleznimi ustanovilo krovno Zdru\u017eenje za redke bolezni Slovenije. Zdru\u017eenje zastopa predsednik Dru\u0161tva hemofilikov Slovenije, gospod Jo\u017ee Faganel, predstavnici Dru\u0161tva distrofikov Slovenije Tei \u010cernigoj Pu\u0161njak, pa je bila zaupana vloga sekretarke.<br \/>\nZdru\u017eenje za redke bolezni Slovenije bo oblikovalo in uveljavljalo skupno dogovorjene zadeve s podro\u010dja redkih bolezni v odnosu do dru\u017ebenega okolja, posameznih strokovnih institucij in dr\u017eave kot celote, kot partner pa se bo aktivno vklju\u010devalo tudi v oblikovanje in izvajanje politik v sistemu zdravstvenega varstva.<br \/>\nZakaj je zdru\u017eevanje obolelih z redkimi boleznimi tako pomembno? Predvsem zaradi uresni\u010devanja skupnih interesov, saj se oboleli, ne glede na diagnozo, vsi sre\u010dujejo s podobnimi te\u017eavami pri iskanju relevantnih informacij, ustrezni zdravstveni in socialni obravnavi ter dostopu do najnovej\u0161ih zdravil, t.i. zdravil sirot.<br \/>\nVe\u010d o tem lahko preberete v prispevku <a href=\"https:\/\/www.dnevnik.si\/1042716051\/zdravje\/bolezen-in-bolecina\/sodelovanje-je-kljucnoza-bolnike-in-zdravnike\" target=\"_blank\">Anite Vo\u0161njak v Dnevniku<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Dru\u0161tvo distrofikov Slovenije je s \u0161e petimi organizacijami, ki zdru\u017eujejo obolele z redkimi boleznimi ustanovilo krovno Zdru\u017eenje za redke bolezni Slovenije. Zdru\u017eenje zastopa predsednik Dru\u0161tva hemofilikov Slovenije, gospod Jo\u017ee Faganel, predstavnici Dru\u0161tva distrofikov Slovenije Tei \u010cernigoj Pu\u0161njak, pa je bila zaupana vloga sekretarke. Zdru\u017eenje za&#8230;<\/p>\n","protected":false},"author":1,"featured_media":16497,"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-16501","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-novice"],"publishpress_future_action":{"enabled":false,"date":"2026-04-20 15:50:35","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\/16501","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\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=16501"}],"version-history":[{"count":0,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/16501\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/media\/16497"}],"wp:attachment":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=16501"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=16501"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=16501"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}