{"id":19446,"date":"2022-01-12T14:56:29","date_gmt":"2022-01-12T13:56:29","guid":{"rendered":"http:\/\/www.drustvo-distrofikov.si\/?p=19446"},"modified":"2022-01-12T14:56:29","modified_gmt":"2022-01-12T13:56:29","slug":"sah-in-teden-sporta-distrofikov-2-2-2-2-2-3-3-2-2-3-2-2-2-2-2-2-2-2-2-2","status":"publish","type":"post","link":"http:\/\/www.drustvo-distrofikov.si\/?p=19446","title":{"rendered":"Redke bolezni v tekmi s \u010dasom"},"content":{"rendered":"<p>Vabimo vas k ogledu izobra\u017eevalno dokumentarnega filma o redkih boleznih, ki je nastal v sodelovanju Dru\u0161tva distrofikov Slovenije in Zdru\u017eenja za redke bolezni Slovenije ter finan\u010dni podpori podjetja Novartis.<\/p>\n<p>Kako se kot star\u0161 sprijazni\u0161, da ima tvoj otrok redko gensko bolezen? \u00bbNe sprijazni\u0161 se. I\u0161\u010de\u0161 re\u0161itve in upa\u0161, da bo znanost razvila nekaj novega,\u00ab pove eden od star\u0161ev v filmu. Redke genske bolezni v Sloveniji prizadenejo okoli 1000 otrok na leto. Za nekatere ni zdravila, pri drugih je napredek znanosti \u017ee popolnoma spremenil \u017eivljenje obolelih in njihovih svojcev na bolje. Genska terapija izbolj\u0161a potek bolezni ali jo celo odpravi. \u010ceprav je v medicini v ospredju \u0161ele nekaj let, prina\u0161a revolucijo v zdravljenju redkih bolezni. Slovenija je v primerjavi z drugimi dr\u017eavami po svetu zelo uspe\u0161na pri odkrivanju in zdravljenju redkih bolezni. V dr\u017eavi deluje tudi raziskovalni in\u0161titut, ki pomembno prispeva k razvoju genske terapije.<\/p>\n<p>Film je opremljen tudi z angle\u0161kimi podnapisi in si ga je mogo\u010de ogledati <a href=\"https:\/\/youtu.be\/xOiYw-Kf-64\">tukaj<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Vabimo vas k ogledu izobra\u017eevalno dokumentarnega filma o redkih boleznih, ki je nastal v sodelovanju Dru\u0161tva distrofikov Slovenije in Zdru\u017eenja za redke bolezni Slovenije ter finan\u010dni podpori podjetja Novartis. Kako se kot star\u0161 sprijazni\u0161, da ima tvoj otrok redko gensko bolezen? \u00bbNe sprijazni\u0161 se. I\u0161\u010de\u0161&#8230;<\/p>\n","protected":false},"author":3,"featured_media":19447,"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-19446","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-novice"],"publishpress_future_action":{"enabled":false,"date":"2026-04-23 03:30:36","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\/19446","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=19446"}],"version-history":[{"count":1,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/19446\/revisions"}],"predecessor-version":[{"id":19448,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/19446\/revisions\/19448"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/media\/19447"}],"wp:attachment":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=19446"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=19446"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=19446"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}