{"id":21343,"date":"2026-01-28T08:36:18","date_gmt":"2026-01-28T07:36:18","guid":{"rendered":"http:\/\/www.drustvo-distrofikov.si\/?p=21343"},"modified":"2026-01-28T08:36:18","modified_gmt":"2026-01-28T07:36:18","slug":"sporocilo-za-javnost-po-usklajevalnem-posvetovanju-invalidskih-organizacij-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-2-2-2-2-2-3-3-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-3-2-2-2-148","status":"publish","type":"post","link":"http:\/\/www.drustvo-distrofikov.si\/?p=21343","title":{"rendered":"Matineja ob dnevu redkih bolezni"},"content":{"rendered":"<p>Spo\u0161tovani,<\/p>\n<p>vljudno vas vabimo k spremljanju Matineje ob svetovnem dnevu redkih bolezni, ki bo potekala <strong>12. februarja 2026 ob 11.00 uri<\/strong> <strong>v hotelu Slon v Ljubljani<\/strong> (obvezna <a href=\"info@zrbs.eu\">prijava<\/a>)* ter na spletnem prenosu na <a href=\"https:\/\/video.sta.si\/\">video.sta.si<\/a>.<\/p>\n<p>Leto\u0161nja Matineja 2026 bo v ospredje postavila vpetost redkih bolezni v zdravstveno-socialni sistem in vpra\u0161anje, kako obstoje\u010de znanje, terapije in podporni mehanizmi zares za\u017eivijo v vsakdanjem \u017eivljenju bolnikov in njihovih dru\u017ein.<\/p>\n<p>Razprava bo usmerjena v:<\/p>\n<ul>\n<li>delovanje in povezovanje zdravstvenega ter socialnega sistema pri obravnavi redkih bolezni,<\/li>\n<li>vlogo institucij in strokovnih slu\u017eb na nacionalni in lokalni ravni,<\/li>\n<li>pomen varnih, u\u010dinkovitih in dostopnih terapij za redke bolezni,<\/li>\n<li>eti\u010dne in odgovorne pristope pri obravnavi ter komuniciranju redkih bolezni,<\/li>\n<li>pomen podpornih mre\u017e in sodelovanja vseh dele\u017enikov.<\/li>\n<\/ul>\n<p>Predstavljeno bo tudi delovanje Centra za redke bolezni, ki deluje na Pediatri\u010dni kliniki UKC v Ljubljani ter pomen celostne obravnave, ki jo namenja bolnikom in njihovim dru\u017einam.<\/p>\n<p>Ve\u010d o samem dogodku si lahko preberete <a href=\"http:\/\/www.drustvo-distrofikov.si\/wp-content\/uploads\/2026\/01\/Matineja_2026_vabilo.pdf\">tukaj<\/a>.<\/p>\n<p>Potrebna je prijava na <a href=\"mailto:info@zrbs.eu\">info@zrbs.eu<\/a> do 6. 2. 2026.<\/p>\n<p>Vljudno vabljeni!<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Spo\u0161tovani, vljudno vas vabimo k spremljanju Matineje ob svetovnem dnevu redkih bolezni, ki bo potekala 12. februarja 2026 ob 11.00 uri v hotelu Slon v Ljubljani (obvezna prijava)* ter na spletnem prenosu na video.sta.si. Leto\u0161nja Matineja 2026 bo v ospredje postavila vpetost redkih bolezni v&#8230;<\/p>\n","protected":false},"author":3,"featured_media":21341,"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-21343","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-novice"],"publishpress_future_action":{"enabled":false,"date":"2026-05-06 16:42:26","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\/21343","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=21343"}],"version-history":[{"count":1,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/21343\/revisions"}],"predecessor-version":[{"id":21344,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/21343\/revisions\/21344"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/media\/21341"}],"wp:attachment":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=21343"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=21343"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=21343"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}