{"id":20303,"date":"2023-06-02T10:32:23","date_gmt":"2023-06-02T08:32:23","guid":{"rendered":"http:\/\/www.drustvo-distrofikov.si\/?p=20303"},"modified":"2023-06-02T11:05:59","modified_gmt":"2023-06-02T09:05:59","slug":"sporocilo-za-javnost-po-usklajevalnem-posvetovanju-invalidskih-organizacij-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-2-2-2-2-2-3-3-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-3-2-2-2-7-5","status":"publish","type":"post","link":"http:\/\/www.drustvo-distrofikov.si\/?p=20303","title":{"rendered":"Ko upanje postane resni\u010dnost"},"content":{"rendered":"<p>VABILO NA TISKOVNO KONFERENCO ZA JAVNOST<\/p>\n<p><strong>\u00bbKO UPANJE POSTANE RESNI\u010cNOST\u00ab<\/strong><\/p>\n<p>&nbsp;<\/p>\n<p><strong>Sre\u010danje na temo \u00bbZdravljenje spinalne mi\u0161i\u010dne atrofije \u2014 ko upanje postane resni\u010dnost\u00ab<\/strong><\/p>\n<p>Spo\u0161tovani \u010dlanice in \u010dlani,<\/p>\n<p>vabimo vas na sre\u010danje o zdravljenju spinalne mi\u0161i\u010dne atrofije Ko upanje postane resni\u010dnost, ki bo\u00a0 <strong>7. junija 2023 ob 10. uri v hotelu City Hotel v Ljubljani, Dalmatinova ulica 15.<\/strong><\/p>\n<p>Kako danes \u017eivijo otroci in odrasli s SMA, ko je na voljo zdravljenje?<\/p>\n<p>Na sre\u010danju vam bomo postregli z informacijami in podatki o dose\u017ekih zdravljenja SMA pri otrocih in odraslih bolnikih v zadnjih petih letih, odkar je na voljo prva terapija. Kaj vse se je spremenilo v zdravljenju te hude bolezni in kaj v \u017eivljenjih bolnikov? Kak\u0161ne novosti se nam obetajo v bli\u017enji prihodnosti?<\/p>\n<p>O tem se bomo pogovarjali z <strong>izr. prof. dr. Damjanom Osredkarjem<\/strong>, predstojnikom Klini\u010dnega oddelka za otro\u0161ko, mladostni\u0161ko in razvojno nevrologijo Pediatri\u010dne klinike v Ljubljani, in <strong>doc. dr. Bla\u017eem Koritnikom<\/strong>, predstojnikom In\u0161tituta za klini\u010dno nevrofiziologijo UKC Ljubljana. Z nami bo tudi <strong>mag. Mateja Toman<\/strong>, predsednica Dru\u0161tva distrofikov Slovenije.<\/p>\n<p>Zgodbe iz \u017eivljenja s SMA boste sli\u0161ali neposredno od dveh bolnikov. Spoznali boste <strong>Teo \u010cernigoj Pu\u0161njak<\/strong>, strokovno sodelavko Dru\u0161tva Distrofikov Slovenije ter sekretarko Zdru\u017eenja za redke bolezni Slovenije in <strong>Simono Jerebi\u010d, <\/strong>mamico deklice Lee s SMA.<\/p>\n<p>Prisr\u010dno vabljeni v na\u0161o pozitivno dru\u017ebo.<\/p>\n<p>Tiskovno konferenco organizira dru\u017eba\u00a0 <img decoding=\"async\" class=\"\" src=\"http:\/\/www.drustvo-distrofikov.si\/wp-content\/uploads\/2023\/06\/Biogen_Logo-scaled.jpg\" width=\"100\" height=\"33\" \/>\u00a0 v sodelovanju z Dru\u0161tvom distrofikov Slovenije.<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>Datum priprave informacije: maj 2023, Biogen &#8211; 210868<\/p>\n","protected":false},"excerpt":{"rendered":"<p>VABILO NA TISKOVNO KONFERENCO ZA JAVNOST \u00bbKO UPANJE POSTANE RESNI\u010cNOST\u00ab &nbsp; Sre\u010danje na temo \u00bbZdravljenje spinalne mi\u0161i\u010dne atrofije \u2014 ko upanje postane resni\u010dnost\u00ab Spo\u0161tovani \u010dlanice in \u010dlani, vabimo vas na sre\u010danje o zdravljenju spinalne mi\u0161i\u010dne atrofije Ko upanje postane resni\u010dnost, ki bo\u00a0 7. junija 2023&#8230;<\/p>\n","protected":false},"author":3,"featured_media":20304,"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-20303","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-novice"],"publishpress_future_action":{"enabled":false,"date":"2026-05-21 00:18:13","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\/20303","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=20303"}],"version-history":[{"count":3,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/20303\/revisions"}],"predecessor-version":[{"id":20309,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/20303\/revisions\/20309"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/media\/20304"}],"wp:attachment":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=20303"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=20303"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=20303"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}