{"id":21047,"date":"2025-04-11T10:56:13","date_gmt":"2025-04-11T08:56:13","guid":{"rendered":"http:\/\/www.drustvo-distrofikov.si\/?p=21047"},"modified":"2025-04-11T10:58:16","modified_gmt":"2025-04-11T08:58:16","slug":"sporocilo-za-javnost-po-usklajevalnem-posvetovanju-invalidskih-organizacij-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-2-2-2-2-2-3-3-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-3-2-2-2-114","status":"publish","type":"post","link":"http:\/\/www.drustvo-distrofikov.si\/?p=21047","title":{"rendered":"Tribuna o redkih boleznih: \u00bbKo je moja, ni ve\u010d redka\u00ab"},"content":{"rendered":"<p>vabljeni na <strong>tribuno o redkih boleznih: \u00bbKo je moja, ni ve\u010d redka\u00ab<\/strong>, ki jo organizira \u010dasnik Ve\u010der.<\/p>\n<p>Tribuna bo potekala <strong>16. aprila ob 10.30 v Modri dvorani Zdravni\u0161ke<\/strong> <strong>zbornice Slovenije <\/strong>(Dunajska cesta 162, Ljubljana), \u00a0spremljati pa jo bo mogo\u010de tudi hibridno na povezavi <a href=\"https:\/\/fb.me\/e\/8I3cHH3Ks\">https:\/\/fb.me\/e\/8I3cHH3Ks<\/a><\/p>\n<p>Na dogodku sodelujejo:<\/p>\n<ul>\n<li>dr. <strong>Tanja Zdol\u0161ek Draksler<\/strong>, raziskovalka na Institutu Jo\u017eef Stefan ter ustanoviteljica in vodja IDefine Europe, nevladne organizacije za zagovorni\u0161tvo in raziskovanje Kleefstrajevega sindroma, redke genetske motnje;<\/li>\n<li><strong>Erika Stariha<\/strong>, ustanoviteljica Evropske fundacije SATB2, ustanove za sindrom SATB2, ter mama fanta s to redko boleznijo;<\/li>\n<li><strong>Mateja Toman<\/strong>, predsednica Dru\u0161tva distrofikov Slovenije, ki distrofikom utira pot v aktivno \u017eivljenje in jim pomaga k zdravju;<\/li>\n<li><strong>Nike R. Vencelj<\/strong>, \u0161tudentka z redko boleznijo, Friedreichovo ataksijo;<\/li>\n<li><strong>Brina Zaman<\/strong>, \u010dlanica Evropskega konzorcija za hemofilijo (EHC) in mama fantka s hemofilijo;<\/li>\n<li><strong>prof. Jo\u017ee Faganel<\/strong>, predsednik Zdru\u017eenja za redke bolezni Slovenije;<\/li>\n<li>dr. <strong>Sara Bertok<\/strong>, specialistka pediatrije in klini\u010dne genetike s Centra za redke bolezni, Pediatri\u010dna klinika Ljubljana;<\/li>\n<li>izr. prof. dr. <strong>Irena Prelo\u017enik Zupan<\/strong>, specialistka hematologinja in specialistka za redke krvne bolezni s Klini\u010dnega oddelka za hematologijo, UKC Ljubljana;<\/li>\n<li>prof. dr. <strong>Damjan Osredkar<\/strong>, specialist pediater nevrolog in predstojnik Klini\u010dnega oddelka za otro\u0161ko, mladostni\u0161ko in razvojno nevrologijo, Pediatri\u010dna klinika Ljubljana.<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<p>Prosim vas, \u010de se boste dogodka udele\u017eili v \u017eivo, da svoj prihod zaradi la\u017eje organizacije dogodka napoveste prek e-po\u0161te: <a href=\"mailto:mateja.bratuz@advalue.si\"><strong>mateja.bratuz@advalue.si<\/strong><\/a>, in sicer do ponedeljka, <strong>14. aprila, do 10. ure<\/strong>.<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>vabljeni na tribuno o redkih boleznih: \u00bbKo je moja, ni ve\u010d redka\u00ab, ki jo organizira \u010dasnik Ve\u010der. Tribuna bo potekala 16. aprila ob 10.30 v Modri dvorani Zdravni\u0161ke zbornice Slovenije (Dunajska cesta 162, Ljubljana), \u00a0spremljati pa jo bo mogo\u010de tudi hibridno na povezavi https:\/\/fb.me\/e\/8I3cHH3Ks Na&#8230;<\/p>\n","protected":false},"author":3,"featured_media":21048,"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-21047","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-novice"],"publishpress_future_action":{"enabled":false,"date":"2026-05-06 18:06:47","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\/21047","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=21047"}],"version-history":[{"count":2,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/21047\/revisions"}],"predecessor-version":[{"id":21051,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/21047\/revisions\/21051"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/media\/21048"}],"wp:attachment":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=21047"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=21047"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=21047"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}