{"id":334,"date":"2019-03-22T11:15:53","date_gmt":"2019-03-22T09:15:53","guid":{"rendered":"https:\/\/cdn.jevelin.shufflehound.com\/digital-media-agency\/?p=1"},"modified":"2020-12-21T16:56:44","modified_gmt":"2020-12-21T14:56:44","slug":"rare-2030","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/rare-2030\/","title":{"rendered":"Rare 2030"},"content":{"rendered":"<p><strong>Hrvatska sudjelovala u predlaganju preporuka za razvijanje desetogodi\u0161nje strategije za rijetke bolesti na razini Europe. Okupilo se 45 relevantnih dionika iz razli\u010ditih interesnih skupina koji se u svom radu du\u017ei niz godina bave rijetkim bolestima.<\/strong><\/p>\n\n\n\n<p>U prvom dijelu online doga\u0111anja najva\u017enija je bila panel diskusija o budu\u0107im izazovima u podru\u010dju rijetkih bolesti. U panel diskusiji sudjelovali su g\u0111a Dunja Skoko Poljak iz Ministarstva zdravstva, g\u0111a. Anica Je\u017ei\u0107 iz Ministarstva rada, mirovinskog sustava, obitelji i socijalne politike, g\u0111a. Vlasta Zmazek, predsjednica Hrvatskog saveza za rijetke bolesti, prof. Ivo Bari\u0107, pro\u010delnik zavoda za medicinsku genetiku i bolesti metabolizma i g. Tomislav Benjak iz Hrvatskog zavoda za javno zdravstvo.<\/p>\n\n\n\n<p>U drugom dijelu doga\u0111anja predstavnici institucija, akademske zajednice, lije\u010dnici specijalisti, predstavnici pacijenata i industrije aktivno su sudjelovali u dono\u0161enju preporuka za 5 va\u017enih podru\u010dja.<\/p>\n\n\n\n<p>Dono\u0161enje nacionalnih strategija za rijetke bolesti<\/p>\n\n\n\n<p>(Dostupnost) zdravstvene skrbi za rijetke bolesti<\/p>\n\n\n\n<p>Holisti\u010dki pristup i integrirana skrb<\/p>\n\n\n\n<p>Podaci kao strate\u0161ki alat u planiranju, organizaciji i dostupnosti zdravstvene skrbi<\/p>\n\n\n\n<p>Uloga predstavnika pacijenata<\/p>\n\n\n\n<p>Rare2030 dvogodi\u0161nja je studija koju vodi EURORDIS i koja okuplja veliki broj pacijenata, lije\u010dnika i klju\u010dnih dionika, kako bi predlo\u017eila preporuke politika koje \u0107e pomo\u0107i u oblikovanju mape za bolju budu\u0107nost ljudi koji \u017eive s rijetkim bolestima u Europi. Tijekom posljednja dva desetlje\u0107a proveden je niz uspje\u0161nih inicijativa i projekata na EU i na nacionalnim razinama, a sve to uklju\u010duje \u0161irok spektar dionika koji su pomogli u podizanju svijesti i predlo\u017eili konkretna rje\u0161enja za pobolj\u0161anje \u017eivota osoba s rijetkim bolestima. Ipak, potreban je novi okvir odr\u017eive politike i na EU i na nacionalnoj razini. Stoga nastojimo metodom predvi\u0111anja najbolje podr\u017eati budu\u0107e odluke o politikama za rijetke bolesti s odgovaraju\u0107im vremenom za pripremu na\u0161e zajednice i primjerenim strate\u0161kim odgovorom.&nbsp;<a href=\"https:\/\/www.rare2030.eu\/\">Rare2030<\/a><\/p>\n\n\n\n<p>Nastale preporuke i detaljni izvje\u0161taji s doga\u0111anja uskoro \u0107e biti dostupni na hrvatsko\u00ad\u00adm i engleskom jeziku.<\/p>","protected":false},"excerpt":{"rendered":"<p>Hrvatska sudjelovala u predlaganju preporuka za razvijanje desetogodi\u0161nje strategije za rijetke bolesti na razini Europe. Okupilo se 45 relevantnih dionika iz razli\u010ditih interesnih skupina koji se u svom radu du\u017ei niz godina bave rijetkim bolestima. U prvom dijelu online doga\u0111anja najva\u017enija je bila panel diskusija&#8230;<\/p>","protected":false},"author":1,"featured_media":813,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"content-type":"","footnotes":""},"categories":[5,2],"tags":[],"class_list":["post-334","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-media","category-usluge"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Rare 2030 - 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\/rare-2030\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rare 2030 - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"Hrvatska sudjelovala u predlaganju preporuka za razvijanje desetogodi\u0161nje strategije za rijetke bolesti na razini Europe. 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