{"id":21405,"date":"2026-04-17T14:26:12","date_gmt":"2026-04-17T12:26:12","guid":{"rendered":"http:\/\/www.drustvo-distrofikov.si\/?p=21405"},"modified":"2026-04-17T14:29:53","modified_gmt":"2026-04-17T12:29:53","slug":"sporocilo-za-javnost-po-usklajevalnem-posvetovanju-invalidskih-organizacij-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-2-2-2-2-2-3-3-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-3-2-2-2-154","status":"publish","type":"post","link":"http:\/\/www.drustvo-distrofikov.si\/?p=21405","title":{"rendered":"Javna tribuna o redkih boleznih \u00bbKo je moja, ni ve\u010d redka\u00ab"},"content":{"rendered":"<p>Vljudno vas vabimo na <strong>javno tribuno o redkih boleznih <em>\u00bbKo je moja, ni ve\u010d redka\u00ab<\/em><\/strong>, ki bo v <strong>torek, 21. aprila 2026, ob 11. uri<\/strong> v Modri dvorani Zdravni\u0161ke zbornice Slovenije (Dunajska cesta 162, Ljubljana).<\/p>\n<p>Leto\u0161nja tribuna bo osvetlila <strong>(neizpolnjene) potrebe bolnikov z redkimi boleznimi v Sloveniji<\/strong>. Svoje zgodbe bodo delili bolniki, predstavniki dru\u0161tev in strokovnjaki. Sodelovali bodo:<\/p>\n<ul>\n<li><strong>Nina Kobler<\/strong>, bolnica s plju\u010dno arterijsko hipertenzijo<\/li>\n<li><strong>Mateja Toman<\/strong>, Dru\u0161tvo distrofikov Slovenije<\/li>\n<li><strong>Sa\u0161a Ciber<\/strong>, bolnica z miastenijo gravis<\/li>\n<li><strong>Teja Iskra Cigljar<\/strong>, bolnica s hereditarnim angioedemom<\/li>\n<li><strong>Renato Bric<\/strong>, predstavnik bolnikov s hemofilijo in urednik portala za hemofilike HaemoAmicus<\/li>\n<li><strong>Marko Mikulin<\/strong>, bolnik z Leberjevo hereditarno opti\u010dno nevropatijo in \u010dlan dru\u0161tva Svetloba<\/li>\n<li><strong>Vinko Golmajer<\/strong>, bolnik s transtiretinsko amiloidozo srca<\/li>\n<li>dr. <strong>Janez Zidar<\/strong>, specialist nevrolog z In\u0161tituta za nevrofiziologijo UKC Ljubljana<\/li>\n<li><strong>Polona Mo\u017ee<\/strong>, bolnica s SMA tipa 3<\/li>\n<li><strong>Rok Ferengja<\/strong>, glasbenik, udele\u017eenec projekta A life in a day<\/li>\n<li>dr. <strong>Marko Hawlina<\/strong>, specialist oftalmolog za nevrooftalmolo\u0161ke bolezni<\/li>\n<li>dr. <strong>Damjan Osredkar<\/strong>, specialist pediater nevrolog in predstojnik Klini\u010dnega oddelka za otro\u0161ko, mladostni\u0161ko in razvojno nevrologijo Pediatri\u010dne klinike Ljubljana<\/li>\n<li><strong>Alenka Bikar<\/strong>, na\u0161a nekdanja atletinja in bolnica z nevromielitisom \u017eivca opti\u010dnega spektra (NMOSD)<\/li>\n<li><strong>Brane Lavri\u010d<\/strong>, bolnik s Friedreichovo ataksijo<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<p>Prosimo, da svojo udele\u017ebo na dogodku sporo\u010dite na <strong><a href=\"mailto:mateja.bratuz@advalue.si\">mateja.bratuz@advalue.si<\/a><\/strong>.<\/p>\n<p>Mo\u017eno pa bo tudi spremlja v \u017eivo na povezavi: <a href=\"https:\/\/player.mediastream.si\/01kp85j28xfe1b9982bq3dn04n\">https:\/\/player.mediastream.si\/01kp85j28xfe1b9982bq3dn04n<\/a><\/p>\n<p>&nbsp;<\/p>\n<p><a href=\"http:\/\/www.drustvo-distrofikov.si\/wp-content\/uploads\/2026\/04\/vabilo.pdf\">PROGRAM<\/a><\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Vljudno vas vabimo na javno tribuno o redkih boleznih \u00bbKo je moja, ni ve\u010d redka\u00ab, ki bo v torek, 21. aprila 2026, ob 11. uri v Modri dvorani Zdravni\u0161ke zbornice Slovenije (Dunajska cesta 162, Ljubljana). Leto\u0161nja tribuna bo osvetlila (neizpolnjene) potrebe bolnikov z redkimi boleznimi&#8230;<\/p>\n","protected":false},"author":3,"featured_media":21404,"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-21405","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-novice"],"publishpress_future_action":{"enabled":false,"date":"2026-04-26 16:14:24","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\/21405","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=21405"}],"version-history":[{"count":3,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/21405\/revisions"}],"predecessor-version":[{"id":21410,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/21405\/revisions\/21410"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/media\/21404"}],"wp:attachment":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=21405"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=21405"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=21405"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}