{"id":6431,"date":"2026-07-13T12:13:12","date_gmt":"2026-07-13T10:13:12","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=6431"},"modified":"2026-07-13T12:13:15","modified_gmt":"2026-07-13T10:13:15","slug":"predstavnica-hrvatskog-saveza-za-rijetke-bolesti-sudjelovala-na-rare-diseases-international-membership-meetingu-u-keniji","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/predstavnica-hrvatskog-saveza-za-rijetke-bolesti-sudjelovala-na-rare-diseases-international-membership-meetingu-u-keniji\/","title":{"rendered":"Predstavnica Hrvatskog saveza za rijetke bolesti sudjelovala na Rare Diseases International Membership Meetingu u Keniji"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Kao predstavnica Hrvatskog saveza za rijetke bolesti te aktivna \u010dlanica globalnog RDI Youth Leadership programa, na\u0161a Ida Mirkovi\u0107 Knaus pro\u0161log je tjedna sudjelovala na Rare Diseases International Membership Meeting-u u Nairobiju, Keniji.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Ovaj anga\u017eman donosi veliku vrijednost za Savez jer kroz izravnu razmjenu globalnih praksi i umre\u017eavanje s me\u0111unarodnim liderima donosi nova znanja i alate koji \u0107e se primijeniti u svakodnevnom radu u Hrvatskoj, osiguravaju\u0107i pritom da se glas na\u0161ih pacijenata sna\u017eno \u010duje na svjetskoj razini.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Klju\u010dne aktivnosti s ovog sastanka bile su:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>glas mladih na strate\u0161kim pozicijama: unutar Youth Leadership programa predstavnica na\u0161eg Saveza odr\u017eala je zapa\u017eenu prezentaciju u kojoj je zagovarala nu\u017enost aktivnog uklju\u010divanja mladih, uvo\u0111enje fiksnih kvota i davanje stvarnog prava glasa mladim liderima u upravlja\u010dkim tijelima.<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>sastanci s \u010delnicima RDI-ja: Na va\u017enim bilateralnim sastancima s predsjednicom Upravnog odbora RDI-ja (Kirsten Johnson) i novim izvr\u0161nim direktorom (Ravi Ram) otvoren je dijalog o pozicioniranju mladih unutar mre\u017ee te o konkretnim mogu\u0107nostima za budu\u0107u me\u0111unarodnu suradnju Saveza.<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>razvoj novih vje\u0161tina: Sudjelovanjem na radionicama o izgradnji zagovara\u010dkog identiteta, digitalnoj pristupa\u010dnosti i odr\u017eivosti neprofitnih organizacija ste\u010dena su dragocjena iskustva za daljnje unaprje\u0111enje lokalnih aktivnosti Saveza.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Tijekom susreta premijerno je prikazan i kratki dokumentarni film snimljen u suradnji s Ipsen Fondation, koji prati pri\u010du o ru\u0161enju stigme i snazi mladih zagovaratelja. Pogledajte dokumentarni film &#8220;Portrait of a youth advocate: Ida &#8211; beyond stigma&#8221;: <a href=\"https:\/\/youtu.be\/XtsLZQOKI3I?si=O1lUW2gvdr1moUao&amp;fbclid=IwZXh0bgNhZW0CMTAAYnJpZBExaUw0Vjl6MVpucG92QlMyWXNydGMGYXBwX2lkEDIyMjAzOTE3ODgyMDA4OTIAAR5mB8tWxeqG2wL_x7bbx5A1Z6m08Pzw7Pf212Y-DptFP05SxfBiGQGTDi-sqg_aem_uTIP5znqqKgvJp8Uy574Ug\" rel=\"noreferrer noopener\" target=\"_blank\">https:\/\/youtu.be\/XtsLZQOKI3I?si=O1lUW2gvdr1moUao<\/a><\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"571\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/07\/IMG_20260707_104952-1024x571.jpg\" alt=\"\" class=\"wp-image-6432\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/07\/IMG_20260707_104952-1024x571.jpg 1024w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/07\/IMG_20260707_104952-300x167.jpg 300w, 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Ovaj anga\u017eman donosi veliku vrijednost za Savez jer kroz izravnu razmjenu globalnih praksi&#8230;<\/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-6431","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Predstavnica Hrvatskog saveza za rijetke bolesti sudjelovala na Rare Diseases International Membership Meetingu u Keniji - 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\/predstavnica-hrvatskog-saveza-za-rijetke-bolesti-sudjelovala-na-rare-diseases-international-membership-meetingu-u-keniji\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Predstavnica Hrvatskog saveza za rijetke bolesti sudjelovala na Rare Diseases International Membership Meetingu u Keniji - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"Kao predstavnica Hrvatskog saveza za rijetke bolesti te aktivna \u010dlanica globalnog RDI Youth Leadership programa, na\u0161a Ida Mirkovi\u0107 Knaus pro\u0161log je tjedna sudjelovala na Rare Diseases International Membership Meeting-u u Nairobiju, Keniji. Ovaj anga\u017eman donosi veliku vrijednost za Savez jer kroz izravnu razmjenu globalnih praksi...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/rijetke-bolesti.com\/en\/predstavnica-hrvatskog-saveza-za-rijetke-bolesti-sudjelovala-na-rare-diseases-international-membership-meetingu-u-keniji\/\" \/>\n<meta property=\"og:site_name\" content=\"Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"article:published_time\" content=\"2026-07-13T10:13:12+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-07-13T10:13:15+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/07\/IMG_20260707_104952.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1320\" \/>\n\t<meta property=\"og:image:height\" content=\"736\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"sara\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"sara\" \/>\n\t<meta name=\"twitter:label2\" content=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/rijetke-bolesti.com\/predstavnica-hrvatskog-saveza-za-rijetke-bolesti-sudjelovala-na-rare-diseases-international-membership-meetingu-u-keniji\/\",\"url\":\"https:\/\/rijetke-bolesti.com\/predstavnica-hrvatskog-saveza-za-rijetke-bolesti-sudjelovala-na-rare-diseases-international-membership-meetingu-u-keniji\/\",\"name\":\"Predstavnica Hrvatskog saveza za rijetke bolesti sudjelovala na Rare Diseases International Membership Meetingu u Keniji - 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