{"id":12148,"date":"2025-02-25T13:06:00","date_gmt":"2025-02-25T12:06:00","guid":{"rendered":"https:\/\/hl-dizajn.hr\/?p=12148"},"modified":"2025-09-20T13:12:22","modified_gmt":"2025-09-20T11:12:22","slug":"medunarodni-dan-rijetkih-bolesti-28-veljace-2025","status":"publish","type":"post","link":"https:\/\/hl-dizajn.hr\/en\/medunarodni-dan-rijetkih-bolesti-28-veljace-2025\/","title":{"rendered":"Me\u0111unarodni dan rijetkih bolesti \u2013 28. velja\u010de 2025."},"content":{"rendered":"<p><strong>Me\u0111unarodni dan rijetkih bolesti<\/strong>&nbsp;obilje\u017eava se svake godine krajem velja\u010de, u prijestupnim godinama simboli\u010dno upravo&nbsp;<strong>29. velja\u010de<\/strong>&nbsp;\u2013 najrje\u0111eg dana u kalendaru, a u godinama koje to nisu,&nbsp;<strong>28. velja\u010de<\/strong>. Ovaj dan posve\u0107en je podizanju svijesti o rijetkim bolestima koje, premda pojedina\u010dno poga\u0111aju mali broj ljudi, sveukupno utje\u010du na milijune obitelji diljem svijeta.<\/p>\n\n\n\n<p>Rijetkim bolestima po definiciji smatraju se one bolesti koje&nbsp;<strong>poga\u0111aju manje od 1 na 2000 osoba<\/strong>, a ve\u0107ina ih je genetskog podrijetla. Pojedina\u010dno, one su rijetke, ali budu\u0107i da ih je identificirano&nbsp;<strong>preko 6000<\/strong>, procjenjuje se da u svijetu \u017eivi&nbsp;<strong>preko 300 milijuna osoba s razli\u010ditim oblicima rijetkih bolesti<\/strong>. Me\u0111u njih, sukladno svojoj incidenciji, spadaju i mi\u0161i\u0107ne distrofije i neuromuskularne bolesti. Rijetke bolesti op\u0107enito, kao i sama mi\u0161i\u0107na distrofija i neuromuskularne bolesti, \u010desto su kroni\u010dne, progresivne i slo\u017eene te zahtijevaju multidisciplinarnu podr\u0161ku i suradnju zdravstvenog i socijalnog sustava.<\/p>\n\n\n\n<p>Cilj obilje\u017eavanja Me\u0111unarodnog dana rijetkih bolesti je osna\u017eiti zajednicu osoba koje \u017eive s rijetkim bolestima, potaknuti dono\u0161enje boljih politika i osigurati ravnopravniji pristup dijagnostici, lije\u010denju i podr\u0161ci.<\/p>\n\n\n\n<p>Savez dru\u0161tava distrofi\u010dara Hrvatske \u2013 SDDH ove se godine pridru\u017euje globalnim nastojanjima za ve\u0107u vidljivost rijetkih bolesti&nbsp;<strong>prevo\u0111enjem i dijeljenjem informativnih kartica<\/strong>&nbsp;koje je kreirala Me\u0111unarodna organizacija za rijetke bolesti. Kartice nude sa\u017eete informacije o rijetkim bolestima i izazovima s kojima se suo\u010davaju osobe s rijetkim bolestima i njihove obitelji.<\/p>\n\n\n\n<p>Pozivamo vas da se informirate i&nbsp;dijelite kartice koje klikom mo\u017eete pogledati i preuzeti ispod te&nbsp;podr\u017eite osobe s rijetkim bolestima \u2013&nbsp;<strong>jer svaki glas i svaka podr\u0161ka \u010dine razliku<\/strong>!<\/p>\n\n\n\n<p>Tako\u0111er, sve udruge pozivamo da&nbsp;<strong><a href=\"https:\/\/www.rarediseaseday.org\/become-a-friend\/\">apliciranjem<\/a><\/strong>&nbsp;kroz ispunjavanje formulara&nbsp;s kratkim infomacijama o udruzi putem stranice me\u0111unarodne organizacije Dana rijetkih bolesti postanu \u201c<strong>Prijatelj Dana rijetkih bolesti<\/strong>\u201c.<\/p>\n\n\n\n<p>#DanRijetkihBolesti #RareDiseaseDay<\/p>\n\n\n\n<figure class=\"wp-block-image\"><a class=\"sizeable\" href=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card1_300million_croatian.jpg\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card1_300million_croatian.jpg\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image\"><a class=\"sizeable\" href=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card2_5_croatian.jpg\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card2_5_croatian.jpg\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image\"><a class=\"sizeable\" href=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card3_3rd_croatian.jpg\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card3_3rd_croatian.jpg\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image\"><a class=\"sizeable\" href=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card4_6000_croatian.jpg\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card4_6000_croatian.jpg\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image\"><a class=\"sizeable\" href=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card5_72_croatian.jpg\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card5_72_croatian.jpg\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image\"><a class=\"sizeable\" href=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card6_70_croatian.jpg\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card6_70_croatian.jpg\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image\"><a class=\"sizeable\" href=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card7_Equity_croatian.jpg\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card7_Equity_croatian.jpg\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image\"><a class=\"sizeable\" href=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card8_RareCancersIncidence_croatian.jpg\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card8_RareCancersIncidence_croatian.jpg\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image\"><a class=\"sizeable\" href=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card9_RareCancersSurvivalRate_croatian.jpg\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/Dan%20rijetkih%20bolesti%202025\/Card9_RareCancersSurvivalRate_croatian.jpg\" alt=\"\"\/><\/a><\/figure>","protected":false},"excerpt":{"rendered":"<p>Me\u0111unarodni dan rijetkih bolesti&nbsp;obilje\u017eava se svake godine krajem velja\u010de, u prijestupnim godinama simboli\u010dno upravo&nbsp;29. velja\u010de&nbsp;\u2013 najrje\u0111eg dana u kalendaru, a u godinama koje to nisu,&nbsp;28. velja\u010de. Ovaj dan posve\u0107en je podizanju svijesti o rijetkim bolestima koje, premda pojedina\u010dno poga\u0111aju mali broj ljudi, sveukupno utje\u010du na milijune obitelji diljem svijeta. Rijetkim bolestima po definiciji smatraju se [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":12149,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"elementor_theme","format":"standard","meta":{"footnotes":""},"categories":[16],"tags":[68],"class_list":["post-12148","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-sddh-vijesti","tag-sustavna-podrska"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Me\u0111unarodni dan rijetkih bolesti \u2013 28. velja\u010de 2025. - SDDH<\/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:\/\/hl-dizajn.hr\/en\/medunarodni-dan-rijetkih-bolesti-28-veljace-2025\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Me\u0111unarodni dan rijetkih bolesti \u2013 28. velja\u010de 2025. - SDDH\" \/>\n<meta property=\"og:description\" content=\"Me\u0111unarodni dan rijetkih bolesti&nbsp;obilje\u017eava se svake godine krajem velja\u010de, u prijestupnim godinama simboli\u010dno upravo&nbsp;29. velja\u010de&nbsp;\u2013 najrje\u0111eg dana u kalendaru, a u godinama koje to nisu,&nbsp;28. velja\u010de. Ovaj dan posve\u0107en je podizanju svijesti o rijetkim bolestima koje, premda pojedina\u010dno poga\u0111aju mali broj ljudi, sveukupno utje\u010du na milijune obitelji diljem svijeta. 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