{"id":19866,"date":"2022-08-31T16:41:37","date_gmt":"2022-08-31T14:41:37","guid":{"rendered":"http:\/\/www.drustvo-distrofikov.si\/?p=19866"},"modified":"2022-08-31T16:46:15","modified_gmt":"2022-08-31T14:46:15","slug":"sporocilo-za-javnost-po-usklajevalnem-posvetovanju-invalidskih-organizacij-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-2-2-2-2-2-3-3-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-3-2-2-2-5-3","status":"publish","type":"post","link":"http:\/\/www.drustvo-distrofikov.si\/?p=19866","title":{"rendered":"\u017denske in Duchennova mi\u0161i\u010dna distrofija"},"content":{"rendered":"

Vabimo Vas na dogodek ob Svetovnem dnevu Duchennove in Beckerjeve mi\u0161i\u010dne distrofije,<\/strong> v soboto 10. septembra 2022, s pri\u010detkom ob 10. uri, <\/strong>\u00a0v<\/strong> Domu dva topola<\/strong> v Izoli, pod naslovom<\/p>\n

\u017denske in Duchennova mi\u0161i\u010dna distrofija<\/strong><\/p>\n

Svetovna organizacija za obolele z DMD (World Duchenne Organization) je za leto\u0161njo temo Svetovnega dneva Duchennove mi\u0161i\u010dne distrofije izbrala \u00bb\u017denske in Duchennova mi\u0161i\u010dna distrofija\u00ab<\/strong>.<\/p>\n

\u017denske zavzemajo kar nekaj klju\u010dnih vlog pri osebah z DMD tekom njihovega \u017eivljenja, kot so: \u017eenska v vlogi prena\u0161alke, \u017eenska v vlogi matere, sestre in babice, \u017eenska v vlogi dekleta ter kasneje zaro\u010denke, \u017eene ali partnerke, \u017eenska kot osebna asistentka osebi z DMD ter nenazadnje \u017eenska v vlogi znanstvenice, ki se ukvarja z raziskovanjem DMD.<\/p>\n

Na\u0161e dru\u017eenje bo tematsko razdeljeno na ve\u010d sklopov:<\/p>\n

10:00\u00a0\u00a0 Prihod udele\u017eencev<\/strong><\/p>\n

10:30\u00a0\u00a0 Strokovno predavanje: Najnovej\u0161a dognanja s podro\u010dja DMD <\/strong><\/p>\n

Predavanje bo vodil strokovnjak iz Pediatri\u010dne klinike, UKC Ljubljana (v pripravi).<\/em><\/p>\n

12:30\u00a0\u00a0 Kosilo<\/strong><\/p>\n

14:00\u00a0\u00a0 Strokovno predavanje: Vpliv izvorne dru\u017eine na odraslo \u017eivljenje<\/strong><\/p>\n

Predavanje bo vodila Mirjana Frankovi\u010d, Transakcijski analitik – psihoterapevtka.<\/em><\/p>\n

15:00\u00a0\u00a0 Okrogla miza<\/strong> \u00bb\u017denske&Duchennova distrofija\u00ab <\/strong><\/p>\n

Pridru\u017eili se nam bodo oboleli z DMD in \u017eenske, ki igrajo pomembno vlogo v njihovih \u017eivljenjih ter z nami delili svoje izku\u0161nje.<\/em><\/p>\n

17:00\u00a0\u00a0 Koncert skupine<\/strong> \u00bbMAT NA KVADRAT\u00ab<\/strong><\/p>\n

19:00\u00a0\u00a0 Ve\u010derja<\/strong><\/p>\n

* * * * * *<\/strong><\/p>\n

Za nemoteno izvedbo dogodka vas vljudno prosimo, da nam potrdite svojo udele\u017ebo ter sporo\u010dite morebitno potrebo po prevozu do srede, 7. septembra 2022 <\/strong>na elektronski naslov tamara.horvat@drustvo-distrofikov.si<\/a> oziroma po telefonu na \u0161tevilko: 040 670 732.<\/p>\n

Vljudno vabljeni!<\/p>\n

 <\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Vabimo Vas na dogodek ob Svetovnem dnevu Duchennove in Beckerjeve mi\u0161i\u010dne distrofije, v soboto 10. septembra 2022, s pri\u010detkom ob 10. uri, \u00a0v Domu dva topola v Izoli, pod naslovom \u017denske in Duchennova mi\u0161i\u010dna distrofija Svetovna organizacija za obolele z DMD (World Duchenne Organization) je…<\/p>\n","protected":false},"author":3,"featured_media":19867,"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-19866","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-novice"],"publishpress_future_action":{"enabled":false,"date":"2026-05-26 01:27:20","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\/19866","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=19866"}],"version-history":[{"count":2,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/19866\/revisions"}],"predecessor-version":[{"id":19870,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/19866\/revisions\/19870"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/media\/19867"}],"wp:attachment":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=19866"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=19866"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=19866"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}