{"id":4168,"date":"2025-01-20T09:44:00","date_gmt":"2025-01-20T07:44:00","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=4168"},"modified":"2025-01-16T09:45:37","modified_gmt":"2025-01-16T07:45:37","slug":"savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-kalendar-rijetkih-dijagnoza","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-kalendar-rijetkih-dijagnoza\/","title":{"rendered":"Rare Disease Counseling Center \u2013 A Comprehensive Support System \u2013 Rare Diagnosis Calendar"},"content":{"rendered":"

Prema referentnom portalu za rijetke bolesti, Orphanetu, trenutno postoji vi\u0161e od 6400 rijetkih dijagnoza. Ove bolesti, koje su \u010desto neprepoznate i nedovoljno istra\u017eene, zahtijevaju posebnu pa\u017enju i podr\u0161ku kako bi se pobolj\u0161ala kvaliteta \u017eivota oboljelih i omogu\u0107ila im bolja dijagnostika i lije\u010denje.<\/p>\n\n\n\n

Rijetke bolesti su prema definiciji one bolesti koje se javljaju na manje od 5 pojedinaca na 10 000 stanovnika. Iako rijetke, kada se uzme veliki broj rijetkih bolesti, a zbog svoje specifi\u010dnosti, \u010desto ostaju neprepoznate ili slabo razumljive od strane javnosti i medicinskog osoblja. Iako svaka od tih dijagnoza predstavlja jedinstvenu medicinsku situaciju, zajedni\u010dka im je \u010dinjenica da zahtijevaju specijaliziranu skrb i pristup.<\/p>\n\n\n\n

Neke rijetke bolesti imaju \u010dak i svoje posebne dane posve\u0107ene podizanju svijesti. Takvi dani va\u017eni su jer omogu\u0107uju zajednici, obiteljima, stru\u010dnjacima i vladama da se usmjere na specifi\u010dne izazove s kojima se suo\u010davaju oboljeli i njihovi najbli\u017ei. Obilje\u017eavanje tih dana poma\u017ee u \u0161irenju informacija, podr\u0161ci istra\u017eivanjima te ja\u010danju socijalne inkluzije.<\/p>\n\n\n\n

Kalendar rijetkih dijagnoza<\/a>Download<\/a><\/div>\n\n\n\n

The program is co-financed by the City of Zagreb, through the Office for Social Protection, Health, Veterans, and Persons with Disabilities.<\/p>\n\n\n

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

According to the reference portal for rare diseases, Orphanet, there are currently more than 6,400 rare diagnoses.\nThese diseases, often unrecognized and insufficiently researched, require special attention and support in order to improve the quality of life of those affected and to enable better diagnosis and treatment.\nRare diseases are...<\/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-4168","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"\nSavjetovali\u0161te za rijetke bolesti \u2013 sustav sveobuhvatne podr\u0161ke \u2013 Kalendar rijetkih dijagnoza - 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\/savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-kalendar-rijetkih-dijagnoza\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Savjetovali\u0161te za rijetke bolesti \u2013 sustav sveobuhvatne podr\u0161ke \u2013 Kalendar rijetkih dijagnoza - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"Prema referentnom portalu za rijetke bolesti, Orphanetu, trenutno postoji vi\u0161e od 6400 rijetkih dijagnoza. Ove bolesti, koje su \u010desto neprepoznate i nedovoljno istra\u017eene, zahtijevaju posebnu pa\u017enju i podr\u0161ku kako bi se pobolj\u0161ala kvaliteta \u017eivota oboljelih i omogu\u0107ila im bolja dijagnostika i lije\u010denje. 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