{"id":6740,"date":"2026-10-07T08:16:21","date_gmt":"2026-10-07T06:16:21","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=6740"},"modified":"2026-10-07T08:36:13","modified_gmt":"2026-10-07T06:36:13","slug":"cee-patient-engagement-forum-prag","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/cee-patient-engagement-forum-prag\/","title":{"rendered":"CEE Patient Engagement Forum – Prag"},"content":{"rendered":"

Predsjednica Hrvatskog saveza za rijetke bolesti Sara Bajlo Ple\u0161tina sudjelovala je 1. i 2. listopada 2026. u Pragu na 5. godi\u0161njem CEE Patient Engagement Forumu, posve\u0107enom uklju\u010divanju pacijenata u zdravstvene politike u srednjoj i isto\u010dnoj Europi. Forum je okupio predstavnike pacijentskih organizacija i druge dionike iz regije kako bi razmijenili iskustva, predstavili primjere dobre prakse i razgovarali o izazovima s kojima se pacijenti suo\u010davaju u svojim zemljama.<\/p>\n\n\n\n

Na Forumu je obilje\u017eeno pet godina CEE inicijative za uklju\u010divanje pacijenata, a predstavljeni su i rezultati pregleda u kojem je sudjelovalo 27 nacionalnih organizacija iz 22 zemlje. Pregled je pokazao da se razina uklju\u010denosti pacijenata me\u0111u zemljama razlikuje te da su za napredak potrebni jasniji i stabilniji institucionalni okviri. Me\u0111u ostalim izazovima istaknuti su nedostatak transparentnosti u dono\u0161enju odluka te ograni\u010deni resursi i mogu\u0107nosti za osna\u017eivanje pacijentskih organizacija.<\/p>\n\n\n\n

Zna\u010dajan dio rasprava bio je posve\u0107en dostupnosti inovativnih lijekova, razlikama me\u0111u europskim zemljama i pritiscima na zdravstvene prora\u010dune. Sudionici su upozorili na jaz izme\u0111u odobrenja lijeka i njegove stvarne dostupnosti pacijentima te na potrebu za jasnijim kriterijima i obrazlo\u017eenjima odluka o financiranju. Posebno je istaknuto da se lijekovi za rijetke bolesti ponekad procjenjuju prema kriterijima koji ne uzimaju dovoljno u obzir specifi\u010dnosti bolesti i potrebe osoba koje s njima \u017eive.<\/p>\n\n\n\n

U raspravama su predstavljeni i primjeri doprinosa pacijentskih organizacija iz Hrvatske, me\u0111u ostalim u podru\u010dju klini\u010dkih smjernica, socijalne za\u0161tite i prava na rad. Sudionici su naglasili va\u017enost suradnje me\u0111u organizacijama i razmjene iskustava me\u0111u zemljama, osobito ondje gdje su kapaciteti i mogu\u0107nosti utjecaja na odluke ograni\u010deni.<\/p>\n\n\n\n

Zajedni\u010dka poruka Foruma bila je da pacijente i njihove organizacije treba uklju\u010divati pravodobno i smisleno, a ne samo formalno, te im osigurati uvjete za dugoro\u010dan rad. Iskustvo pacijenata mo\u017ee pridonijeti kvalitetnijim zdravstvenim politikama, ve\u0107oj transparentnosti i pravednijem pristupu zdravstvenoj skrbi u svim europskim zemljama.<\/p>\n\n\n\n

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Predsjednica Hrvatskog saveza za rijetke bolesti Sara Bajlo Ple\u0161tina sudjelovala je 1. i 2. listopada 2026. u Pragu na 5. godi\u0161njem CEE Patient Engagement Forumu, posve\u0107enom uklju\u010divanju pacijenata u zdravstvene politike u srednjoj i isto\u010dnoj Europi. Forum je okupio predstavnike pacijentskih organizacija i druge dionike…<\/p>","protected":false},"author":3,"featured_media":6744,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"content-type":"","footnotes":""},"categories":[1],"tags":[],"class_list":["post-6740","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"yoast_head":"\nCEE Patient Engagement Forum - Prag - 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\/cee-patient-engagement-forum-prag\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"CEE Patient Engagement Forum - Prag - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"Predsjednica Hrvatskog saveza za rijetke bolesti Sara Bajlo Ple\u0161tina sudjelovala je 1. i 2. listopada 2026. u Pragu na 5. godi\u0161njem CEE Patient Engagement Forumu, posve\u0107enom uklju\u010divanju pacijenata u zdravstvene politike u srednjoj i isto\u010dnoj Europi. 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