{"id":17960,"date":"2017-10-24T07:28:20","date_gmt":"2017-10-24T05:28:20","guid":{"rendered":"http:\/\/www.drustvo-distrofikov.si\/?p=17960"},"modified":"2017-10-24T07:28:20","modified_gmt":"2017-10-24T05:28:20","slug":"46-letna-skupscina-eamda","status":"publish","type":"post","link":"http:\/\/www.drustvo-distrofikov.si\/?p=17960","title":{"rendered":"46. letna skup\u0161\u010dina EAMDA"},"content":{"rendered":"<p>Letos smo v sodelovanju z <a href=\"http:\/\/www.sddh.hr\/\" target=\"_blank\">Zvezo dru\u0161tev distrofikov Hrva\u0161ke (SDDH)<\/a> organizirali \u017ee 46. letno skup\u0161\u010dino, ki je potekala 14. oktobra v Zagrebu. Celoten dogodek je bil izjemno produktiven, konstruktiven in odmeven, saj smo imeli <a href=\"http:\/\/www.eamda.eu\/images\/46AGA\/PROGRAM.pdf\" target=\"_blank\">zelo zanimiv konferen\u010dni program<\/a>. Glavne teme medicinskega dela programa so bile povezane z novimi etiolo\u0161kimi zdravili, ki so danes \u017ee na voljo distrofikom \u0161irom po Evropi. Dotaknili pa smo se tudi tematik povezanimi z roborantno terapijo in sodobnimi pristopi za elektro-stimulativno terapijo. Gostili smo skoraj 200 udele\u017eencev iz 8 razli\u010dnih evropskih dr\u017eav. Predavatelji so konkretneje govorili o spinalni mi\u0161i\u010dni atrofiji (SMA) pri otrocih in odraslih, standardih za obravnavo obolelih z SMA, zdravljenju otrok z SMA z novim zdravilom Spinraza (nusinersen), o Pompejevi in Duchennovi mi\u0161i\u010dni distrofiji ter o mo\u017enostih zdravljenja. Predstavili pa so nam tudi izzive pri dietetiki in prehrani obolelih z NMD, razlik pri obravnavi obolelih z ALS v razli\u010dnih evropskih dr\u017eavah, o novih neinvazivnih tehnikah, ki lahko nadomestijo tradicionalno mi\u0161i\u010dno biopsijo ter o elektro-stimulativni terapiji imenovani Teenlifting. Slednjo je v praksi predstavila Tea \u010cernigoj-Pu\u0161njak, ki jo na sebi prakticira \u017ee ve\u010d kot dve leti. Opisala je tudi mno\u017eico pozitivnih u\u010dinkov in povedala, da bo s to terapijo zagotovo \u0161e nadaljevala in utrjevala svojo zdravstveno stanje.\u00a0Posnetki dogodka so dosegljivi <a href=\"https:\/\/meduza.carnet.hr\/index.php\/media\/videos?query=eamda\" target=\"_blank\">na tej povezavi<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Letos smo v sodelovanju z Zvezo dru\u0161tev distrofikov Hrva\u0161ke (SDDH) organizirali \u017ee 46. letno skup\u0161\u010dino, ki je potekala 14. oktobra v Zagrebu. Celoten dogodek je bil izjemno produktiven, konstruktiven in odmeven, saj smo imeli zelo zanimiv konferen\u010dni program. Glavne teme medicinskega dela programa so bile&#8230;<\/p>\n","protected":false},"author":1,"featured_media":17959,"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-17960","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-novice"],"publishpress_future_action":{"enabled":false,"date":"2026-06-02 00:05:15","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\/17960","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\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=17960"}],"version-history":[{"count":0,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/17960\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/media\/17959"}],"wp:attachment":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=17960"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=17960"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=17960"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}