{"id":152582,"date":"2024-02-29T20:20:33","date_gmt":"2024-02-29T19:20:33","guid":{"rendered":"https:\/\/likemetkovic.hr\/portal\/?p=152582"},"modified":"2024-02-29T20:27:01","modified_gmt":"2024-02-29T19:27:01","slug":"procelje-gks-a-metkovic-u-ljubicastom-povodom-medunarodnog-dana-rijetkih-bolesti","status":"publish","type":"post","link":"https:\/\/likemetkovic.hr\/portal\/procelje-gks-a-metkovic-u-ljubicastom-povodom-medunarodnog-dana-rijetkih-bolesti\/","title":{"rendered":"Pro\u010delje GKS-a Metkovi\u0107 u ljubi\u010dastom povodom Me\u0111unarodnog dana rijetkih bolesti"},"content":{"rendered":"

Pro\u010delje Gradskoga kulturnoga sredi\u0161ta Metkovi\u0107 ve\u010deras je osvijetljeno ljubi\u010dastom bojom. Metkovi\u0107 se tako pridru\u017eio gradovima diljem Hrvatske koji, osvjetljavanjem gra\u0111evina od posebnoga zna\u010daja, obilje\u017eavaju Me\u0111unarodni dan rijetkih bolesti<\/strong> te pru\u017eaju podr\u0161ku svima onima koji boluju od takvih bolesti, objavio je metkovic.hr<\/a>.<\/p>\n

Rijetke bolesti su one koje poga\u0111aju pet osoba na 10 000 stanovnika, \u0161to zna\u010di da u Hrvatskoj od rijetkih bolesti boluje preko 200 tisu\u0107a ljudi, od kojih polovicu \u010dine djeca. Prema podatcima udru\u017eenja za rijetke bolesti Eurordis, postoji vi\u0161e od 6000 rijetkih bolesti od kojih boluje izme\u0111u 30 i 40 milijuna ljudi u EU-u, a me\u0111u njima je oko 50 % djece.<\/p>\n

\"\"<\/p>\n

Kako je objavljeno na stranici Hrvatskoga zavoda za javno zdravstvo, oko 80 % rijetkih bolesti ima genetski uvjetovanu etiologiju, a druge su rezultat infekcije, alergije i okoli\u0161nih uzroka. Utjecaj takvih bolesti na bolesnike, njihove obitelji i njegovatelje je velik, a \u010desto ostanu i nedijagnosticirane zbog nedostatnog znanja ili te\u0161ko\u0107a. Mnogi se nedostaci povezuju s rijetkim bolestima \u2013 nedovoljna informiranost o rijetkim bolestima, nezadovoljavaju\u0107a medicinska skrb, nedovoljno dostupna terapija, nedostatak \u0161ifri za rijetke bolesti u Me\u0111unarodnoj klasifikaciji bolesti Svjetske zdravstvene organizacije. Za velik dio rijetkih bolesti jo\u0161 uvijek nisu prona\u0111eni u potpunosti u\u010dinkoviti lijekovi, dok su za one za koje postoje, lijekovi uglavnom skupi i nedostupni ve\u0107ini pacijenata.<\/p>\n

Zbog potrebe da se skrb za oboljele od rijetkih bolesti kontinuirano unapre\u0111uje i da se javnost o tome senzibilizira, svake se godine obilje\u017eava Me\u0111unarodni dan rijetkih bolesti. Ovogodi\u0161nji slogan kampanje kojom Hrvatski savez za rijetke bolesti obilje\u017eava Me\u0111unarodni dan rijetkih bolesti je \u2018S rijetkima svaki dan, a ne svake prijestupne\u2019.<\/p>\n

Foto: metkovic.hr<\/p>\n","protected":false},"excerpt":{"rendered":"

Pro\u010delje Gradskoga kulturnoga sredi\u0161ta Metkovi\u0107 ve\u010deras je osvijetljeno ljubi\u010dastom bojom. Metkovi\u0107 se tako pridru\u017eio gradovima diljem Hrvatske koji, osvjetljavanjem gra\u0111evina od posebnoga zna\u010daja, obilje\u017eavaju Me\u0111unarodni dan rijetkih bolesti te pru\u017eaju podr\u0161ku svima onima koji boluju od takvih bolesti, objavio je metkovic.hr. Rijetke bolesti su one koje poga\u0111aju pet osoba na 10 000 stanovnika, \u0161to zna\u010di […]<\/p>\n","protected":false},"author":7,"featured_media":152583,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[296,11],"tags":[12353],"class_list":{"0":"post-152582","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-ab","8":"category-metkovic-dolina","9":"tag-medunarodni-dan-rijetkih-bolesti"},"yoast_head":"\nPro\u010delje GKS-a Metkovi\u0107 u ljubi\u010dastom povodom Me\u0111unarodnog dana rijetkih bolesti - likemetkovic.hr<\/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:\/\/likemetkovic.hr\/portal\/procelje-gks-a-metkovic-u-ljubicastom-povodom-medunarodnog-dana-rijetkih-bolesti\/\" \/>\n<meta property=\"og:locale\" content=\"hr_HR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Pro\u010delje GKS-a Metkovi\u0107 u ljubi\u010dastom povodom Me\u0111unarodnog dana rijetkih bolesti - likemetkovic.hr\" \/>\n<meta property=\"og:description\" content=\"Pro\u010delje Gradskoga kulturnoga sredi\u0161ta Metkovi\u0107 ve\u010deras je osvijetljeno ljubi\u010dastom bojom. Metkovi\u0107 se tako pridru\u017eio gradovima diljem Hrvatske koji, osvjetljavanjem gra\u0111evina od posebnoga zna\u010daja, obilje\u017eavaju Me\u0111unarodni dan rijetkih bolesti te pru\u017eaju podr\u0161ku svima onima koji boluju od takvih bolesti, objavio je metkovic.hr. 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