{"id":20947,"date":"2025-01-24T13:04:33","date_gmt":"2025-01-24T12:04:33","guid":{"rendered":"http:\/\/www.drustvo-distrofikov.si\/?p=20947"},"modified":"2025-01-24T13:04:33","modified_gmt":"2025-01-24T12:04:33","slug":"sporocilo-za-javnost-po-usklajevalnem-posvetovanju-invalidskih-organizacij-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-2-2-2-2-2-3-3-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-3-2-2-2-103","status":"publish","type":"post","link":"http:\/\/www.drustvo-distrofikov.si\/?p=20947","title":{"rendered":"11. nacionalna konferenca ob Dnevu redkih bolezni"},"content":{"rendered":"

Spo\u0161tovani,<\/p>\n

v okviru Mednarodnega dneva redkih bolezni bo 26. februarja 2025 na Brdu pri Kranju potekala 11. nacionalna konferenca ob Dnevu redkih bolezni<\/strong>, katere organizatorja sta Zdru\u017eenje za redke bolezni Slovenije in Ministrstvo za zdravje RS.<\/p>\n

PROGRAM<\/p>\n

08:00 \u2013 09:00 \u00a0\u00a0 Registracija<\/strong><\/p>\n

09:00 \u2013\u00a0 09:30 \u00a0 Uvodni nagovor <\/strong>in umetni\u0161ko-kulturna to\u010dka <\/strong><\/p>\n

    \n
  1. SKLOP PREDAVANJ<\/strong><\/li>\n<\/ol>\n

    9.30 \u2013 10.00\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u017denske in redke bolezni strjevanja krvi<\/strong><\/p>\n

    \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 doc. dr. Barbara Faganel Kotnik<\/strong><\/p>\n

    10.00 \u2013 10.30\u00a0\u00a0\u00a0 Bolniki z redkimi boleznimi in du\u0161evno zdravje<\/strong><\/p>\n

    \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>doc. dr. Marko Pi\u0161ljar<\/strong><\/p>\n

    10.30 \u2013 11.00\u00a0\u00a0\u00a0 Pomo\u010d so bolnikov pri soo\u010danju z boleznijo, med zdravljenjem in povratku nazaj v \u017eivljenjski ritem<\/strong><\/p>\n

    \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 Jo\u017eica Filip\u010di\u010d, predsednica Dru\u0161tva bolnikov s krvnimi boleznimi Slovenije<\/strong><\/p>\n

    11.00 \u2013 11.45\u00a0\u00a0\u00a0 Okrogla miza I: \u017diveti z redko boleznijo\u00a0<\/strong><\/p>\n

    10.50 \u2013 11.00 \u00a0\u00a0 RAZPRAVA<\/strong><\/p>\n

    12.00 \u2013 13.00\u00a0\u00a0\u00a0 ODMOR<\/strong><\/p>\n

      \n
    1. SKLOP PREDAVANJ<\/strong><\/li>\n<\/ol>\n

      13.00 \u2013 14.00\u00a0 \u00a0 \u00bbObrazi Fabryjeve bolezni\u00ab ob 20. obletnici Centra za zdravljenje Fabryjeve bolezni v Bolni\u0161nici Slovenj\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 Gradec<\/strong><\/p>\n

      \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0prim. Bojan Vujkovac<\/strong><\/p>\n

      14.00 \u2013 14.45\u00a0\u00a0\u00a0 Okrogla miza II: Zdravljenje na domu in redke bolezni<\/strong><\/p>\n

      14.45 \u2013 15:00 \u00a0\u00a0 RAZPRAVA IN ZAKLJU\u010cEK<\/strong><\/p>\n

       <\/p>\n

      Ve\u010d o dogodku si lahko preberete na https:\/\/www.zrbs.eu\/aktualno\/11-nacionalna-konferenca-ob-dnevu-redkih-bolezni\/<\/a>.<\/p>\n

      Zaradi la\u017eje organizacije dogodka se je potrebno na dogodek obvezno prijaviti<\/strong>\u00a0na naslednji povezavi: https:\/\/www.1ka.si\/a\/f94f699d<\/a>.<\/p>\n

      QR koda do prijavnice:<\/p>\n

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

      Spo\u0161tovani, v okviru Mednarodnega dneva redkih bolezni bo 26. februarja 2025 na Brdu pri Kranju potekala 11. nacionalna konferenca ob Dnevu redkih bolezni, katere organizatorja sta Zdru\u017eenje za redke bolezni Slovenije in Ministrstvo za zdravje RS. PROGRAM 08:00 \u2013 09:00 \u00a0\u00a0 Registracija 09:00 \u2013\u00a0 09:30…<\/p>\n","protected":false},"author":3,"featured_media":20948,"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-20947","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-novice"],"publishpress_future_action":{"enabled":false,"date":"2026-05-09 21:48:12","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\/20947","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=20947"}],"version-history":[{"count":2,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/20947\/revisions"}],"predecessor-version":[{"id":20951,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/20947\/revisions\/20951"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/media\/20948"}],"wp:attachment":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=20947"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=20947"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=20947"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}