{"id":6254,"date":"2026-03-04T11:33:00","date_gmt":"2026-03-04T09:33:00","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=6254"},"modified":"2026-03-24T11:38:05","modified_gmt":"2026-03-24T09:38:05","slug":"uspjesno-proveden-projekt-kava-s-rijetkima","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/uspjesno-proveden-projekt-kava-s-rijetkima\/","title":{"rendered":"Uspje\u0161no proveden projekt \u201eKava s rijetkima\u201c"},"content":{"rendered":"<p>Od 1. rujna 2025. do 28. velja\u010de 2026. Hrvatski savez za rijetke bolesti proveo je projekt \u201eKava s rijetkima\u201c, financiran sredstvima Grada Zagreba.<br><br>Glavna aktivnost ovog projekta, bili su istoimeni susreti osoba oboljelih od rijetkih bolesti i studenata medicine, pri \u010demu su studenti odgovarali na pitanja oboljelih, ali i slu\u0161aju\u0107i njihova iskustva te postavljaju\u0107i im pitanja, stjecali va\u017ena znanja za svoj budu\u0107i rad.<\/p>\n\n\n\n<p><br>1. susret odr\u017ean je 9.12.2025. s osobama oboljelima od multiplog mijeloma, 2. susret odr\u017ean je 21.1.2026. s osobama oboljelima od sklerodermije, 3. susret odr\u017ean je 5.2.206. s osobama\/\u010dlanovima obitelji razli\u010ditih dijagnoza koje kao jedan od simptoma imaju GERB, dok je posljednji, 4. susret odr\u017ean 10. velja\u010de 2026. s osobama oboljelim od neurofibromatoze. Svi susreti zajedno okupli su 28 osoba oboljelih od rijetkih bolesti te troje studenata medicine.&nbsp;<br>Dodatno, studenti koji su sudjelovali u navedenoj aktivnosti, tako\u0111er su pripremili 6 edukativnih objava objavljenih na web stranici Saveza i Facebook stranici Studentske sekcije za rijetke bolesti. Uz to \u0161to su studenti pripremaju\u0107i sadr\u017eaja objava, pro\u0161irili svoje zanje o rijetkim bolestima, ove objave za cilj imaju edukaciju stru\u010dne i \u0161ire javnosti, ali i nude mogu\u0107nost informiranja oboljelima.<br><br>U sklopu projekta sa svojim volonterskim radom (odgovaranje na medicinske upite) nastavili su studenti Studentske sekcije za rijetke bolesti koji su doprinijeli unapre\u0111enju zdravlja osoba oboljelih od rijetkih bolesti pru\u017eaju\u0107i provjerene i pravovremene informacije te su za trajanja projekta odgovorili na 45 medicinskih upita.<\/p>\n\n\n\n<figure class=\"wp-block-gallery has-nested-images columns-default is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex\">\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"724\" height=\"1024\" data-id=\"5962\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/02\/Vizual-Kava-s-rijetkima_final-724x1024.png\" alt=\"\" class=\"wp-image-5962\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/02\/Vizual-Kava-s-rijetkima_final-724x1024.png 724w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/02\/Vizual-Kava-s-rijetkima_final-212x300.png 212w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/02\/Vizual-Kava-s-rijetkima_final-768x1086.png 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/02\/Vizual-Kava-s-rijetkima_final-1086x1536.png 1086w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/02\/Vizual-Kava-s-rijetkima_final-1448x2048.png 1448w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/02\/Vizual-Kava-s-rijetkima_final-8x12.png 8w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/02\/Vizual-Kava-s-rijetkima_final.png 1587w\" sizes=\"auto, (max-width: 724px) 100vw, 724px\" \/><\/figure>\n<\/figure>","protected":false},"excerpt":{"rendered":"<p>Od 1. rujna 2025. do 28. velja\u010de 2026. Hrvatski savez za rijetke bolesti proveo je projekt \u201eKava s rijetkima\u201c, financiran sredstvima Grada Zagreba. Glavna aktivnost ovog projekta, bili su istoimeni susreti osoba oboljelih od rijetkih bolesti i studenata medicine, pri \u010demu su studenti odgovarali na&#8230;<\/p>","protected":false},"author":3,"featured_media":5966,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"content-type":"","footnotes":""},"categories":[1],"tags":[],"class_list":["post-6254","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Uspje\u0161no proveden projekt \u201eKava s rijetkima\u201c - 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\/uspjesno-proveden-projekt-kava-s-rijetkima\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Uspje\u0161no proveden projekt \u201eKava s rijetkima\u201c - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"Od 1. rujna 2025. do 28. velja\u010de 2026. Hrvatski savez za rijetke bolesti proveo je projekt \u201eKava s rijetkima\u201c, financiran sredstvima Grada Zagreba. Glavna aktivnost ovog projekta, bili su istoimeni susreti osoba oboljelih od rijetkih bolesti i studenata medicine, pri \u010demu su studenti odgovarali na...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/rijetke-bolesti.com\/en\/uspjesno-proveden-projekt-kava-s-rijetkima\/\" \/>\n<meta property=\"og:site_name\" content=\"Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"article:published_time\" content=\"2026-03-04T09:33:00+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-03-24T09:38:05+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/02\/Vizual-Kava-s-rijetkima_kratko.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1587\" \/>\n\t<meta property=\"og:image:height\" content=\"412\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\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=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/rijetke-bolesti.com\/uspjesno-proveden-projekt-kava-s-rijetkima\/\",\"url\":\"https:\/\/rijetke-bolesti.com\/uspjesno-proveden-projekt-kava-s-rijetkima\/\",\"name\":\"Uspje\u0161no proveden projekt \u201eKava s rijetkima\u201c - 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