{"id":3629,"date":"2023-09-22T15:06:24","date_gmt":"2023-09-22T13:06:24","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=3629"},"modified":"2023-09-22T15:06:25","modified_gmt":"2023-09-22T13:06:25","slug":"5-regionalni-sastanak-oboljelih-od-gaucherove-bolesti","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/5-regionalni-sastanak-oboljelih-od-gaucherove-bolesti\/","title":{"rendered":"5. regionalni sastanak oboljelih od Gaucherove bolesti"},"content":{"rendered":"<h2 class=\"wp-block-heading\">Hrvatska udruga oboljelih od Gaucherove bolesti Od 29. rujna do 1. listopada 2023.\u00a0u Zagrebu<\/h2>\n\n\n\n<p>Radi se o ve\u0107 tradicionalnom okupljanju, petom po redu, nakon \u010cate\u017ea (2012), Sarajeva (2014), Beograda (2016) i Struge (2019). Na skupu \u0107e sudjelovati pacijenti, \u010dlanovi njihovih obitelji, lije\u010dnici i medicinske sestre iz Hrvatske, Slovenije, Srbije, Bosne i Hercegovine, Crne Gore i Makedonije. O\u010dekivani broj sudionika skupa je 120.<\/p>\n\n\n\n<p>Ovakva dru\u017eenja oboljelih i njihovih lije\u010dnika, medicinskih sestara i ostalih stru\u010dnjaka i \u010dlanova obitelji koji brinu o Gaucher pacijentima, iznimna su prilika za razmjenu iskustava i edukaciju, a sve u svrhu bolje kvalitete \u017eivota osoba oboljelih od Gaucherove bolesti. S obzirom da je <strong>1. listopad Me\u0111unarodni dan oboljelih od Gaucherove bolesti<\/strong>, ovo je dodatna prilika i za podizanje svjesnosti o Gaucherovoj bolesti. <\/p>\n\n\n\n<p><\/p>\n\n\n\n<p>Gaucherova bolest je rijedak genetski poreme\u0107aj iz skupine oboljenja koja se nazivaju lizosomske bolesti nakupljanja. To je nasljedni poreme\u0107aj koji proizlazi iz nakupljanja molekula lipida u tjelesnim organima i tkivima koje se nazivaju cerebrozidi. Glavni znakovi i simptomi su uve\u0107ana jetra i slezena, nizak broj trombocita i hemoglobina te problemi s kostima i zglobovima. Prvi simptomi bolesti mogu se pojaviti u bilo kojoj \u017eivotnoj dobi. Od ovog rijetkog metaboli\u010dkog poreme\u0107aja boluje vi\u0161e od 60.000 ljudi u svijetu, a u Hrvatskoj je dijagnosticirane 25 oboljelih osoba.<\/p>\n\n\n\n<p>Vi\u0161e informacija o doga\u0111aju, kao i sam program mo\u017eete prona\u0107i na <a href=\"https:\/\/www.hrvatska-gaucher-udruga.hr\/index.php\/5-regionalni-sastanak-oboljelih-od-gaucherove-bolesti?fbclid=IwAR3-e4N5errMoc4_cCbVX0zFT1Q9VjYeWEdJsNMzDSLAs-XTo-YrX2a12gk\">poveznici.<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>Hrvatska udruga oboljelih od Gaucherove bolesti Od 29. rujna do 1. listopada 2023.\u00a0u Zagrebu Radi se o ve\u0107 tradicionalnom okupljanju, petom po redu, nakon \u010cate\u017ea (2012), Sarajeva (2014), Beograda (2016) i Struge (2019). Na skupu \u0107e sudjelovati pacijenti, \u010dlanovi njihovih obitelji, lije\u010dnici i medicinske sestre&#8230;<\/p>","protected":false},"author":3,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"content-type":"","footnotes":""},"categories":[1],"tags":[],"class_list":["post-3629","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>5. regionalni sastanak oboljelih od Gaucherove bolesti - Hrvatski savez za rijetke bolesti<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/rijetke-bolesti.com\/en\/5-regionalni-sastanak-oboljelih-od-gaucherove-bolesti\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"5. regionalni sastanak oboljelih od Gaucherove bolesti - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"Hrvatska udruga oboljelih od Gaucherove bolesti Od 29. rujna do 1. listopada 2023.\u00a0u Zagrebu Radi se o ve\u0107 tradicionalnom okupljanju, petom po redu, nakon \u010cate\u017ea (2012), Sarajeva (2014), Beograda (2016) i Struge (2019). 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