{"id":3664,"date":"2023-11-22T11:32:52","date_gmt":"2023-11-22T09:32:52","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=3664"},"modified":"2025-04-02T11:55:00","modified_gmt":"2025-04-02T09:55:00","slug":"zavrsna-konferencija-projekta-zenski-stav-za-sustav","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/zavrsna-konferencija-projekta-zenski-stav-za-sustav\/","title":{"rendered":"Zavr\u0161na konferencija projekta \u201e\u017denski stav za sustav!\u201c"},"content":{"rendered":"<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"577\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/04\/WEBCOVER-ZENSKI-STAV-ZA-SUSTAV-7-1024x577.png\" alt=\"\" class=\"wp-image-3847\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/04\/WEBCOVER-ZENSKI-STAV-ZA-SUSTAV-7-1024x577.png 1024w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/04\/WEBCOVER-ZENSKI-STAV-ZA-SUSTAV-7-300x169.png 300w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/04\/WEBCOVER-ZENSKI-STAV-ZA-SUSTAV-7-768x433.png 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/04\/WEBCOVER-ZENSKI-STAV-ZA-SUSTAV-7-1536x865.png 1536w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/04\/WEBCOVER-ZENSKI-STAV-ZA-SUSTAV-7-1200x675.png 1200w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/04\/WEBCOVER-ZENSKI-STAV-ZA-SUSTAV-7.png 1640w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<h3 class=\"wp-block-heading\">U Tuheljskim toplicama 17. studenog odr\u017eana je zavr\u0161na konferencija projekta \u201e\u017denski stav za sustav\u201c &#8211; sveobuhvatna podr\u0161ka i osna\u017eivanje \u017eena s izazovima rijetkih bolesti.&nbsp;<\/h3>\n\n\n\n<div style=\"height:67px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"683\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2501-1024x683.jpg\" alt=\"\" class=\"wp-image-3665\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2501-1024x683.jpg 1024w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2501-300x200.jpg 300w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2501-768x512.jpg 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2501-1536x1024.jpg 1536w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2501-2048x1365.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<div style=\"height:60px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Rije\u010d je o projektu podr\u017eanom kroz Fond za aktivno gra\u0111anstvo, sredstvima Islanda, Lihten\u0161tajna i Norve\u0161ke u okviru EGP grantova koji je trajao od po\u010detka rujna 2022. godine do kraja studenog 2023. godine. Projekt je provodio Hrvatski savez za rijetke bolesti, a kao projektni partneri bili su uklju\u010deni CESI \u2013 Centar za edukaciju, savjetovanje i istra\u017eivanje, Inkluzivna ku\u0107a Zvono, Nacionalna organizacija za rijetke bolesti Crne Gore te FRAMBU \u2013 Resursni centar za rijetke bolesti Norve\u0161ka.<\/p>\n\n\n\n<p>Na zavr\u0161noj konferenciji predstavljeni su op\u0107i rezultati projekta te rezultati istra\u017eivanja o problemima \u017eena s rijetkim bolestima i majki djece s rijetkim bolestima, a koje je Laura Martini\u0107, psihologinja Saveza predstavila uz najva\u017enije zaklju\u010dke. Tako\u0111er, konferenciji su prisustvovale korisnice, volonteri koji su bili dio projekta te su neki od njih podijelili svoja iskustva sudjelovanja u projektu. Na kraju konferencije odr\u017ean je okrugli stol na temu \u201eVa\u017enost projekta i status osoba s rijetkim bolestima\u201c na kojem su sudjelovali predstavnici partnerskih organizacija gdje se raspravljalo o utjecaju projekta na psihosocijalno stanje korisnica kao i primjeri dobre prakse za budu\u0107nost rada partnerskih udruga. Zaklju\u010deno je kako je case management model izuzetno va\u017ean u svakoj udruzi i kako je potrebno nastaviti dalje razvijati model te provoditi program volontiranja 1na1 kao dodatnu podr\u0161ku ranjivijim skupinama.<\/p>\n\n\n\n<div style=\"height:79px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\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=\"1024\" height=\"768\" data-id=\"3666\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/20231117_093724-1024x768.jpg\" alt=\"\" class=\"wp-image-3666\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/20231117_093724-1024x768.jpg 1024w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/20231117_093724-300x225.jpg 300w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/20231117_093724-768x576.jpg 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/20231117_093724-1536x1152.jpg 1536w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/20231117_093724-2048x1536.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"683\" data-id=\"3667\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2488-1024x683.jpg\" alt=\"\" class=\"wp-image-3667\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2488-1024x683.jpg 1024w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2488-300x200.jpg 300w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2488-768x512.jpg 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2488-1536x1024.jpg 1536w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2488-2048x1365.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"683\" data-id=\"3668\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2493-1024x683.jpg\" alt=\"\" class=\"wp-image-3668\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2493-1024x683.jpg 1024w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2493-300x200.jpg 300w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2493-768x512.jpg 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2493-1536x1024.jpg 1536w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/IMG_2493-2048x1365.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/figure>\n\n\n\n<div style=\"height:66px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div data-wp-interactive=\"core\/file\" class=\"wp-block-file\"><object data-wp-bind--hidden=\"!state.hasPdfPreview\" hidden class=\"wp-block-file__embed\" data=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/Program-konferencije-Zenski-stav-za-sustav.pdf\" type=\"application\/pdf\" style=\"width:100%;height:600px\" aria-label=\"Embed of \u017denski stav za sustav- program konferencije.\"><\/object><a id=\"wp-block-file--media-f38495f0-382d-45e1-94fb-885be94d0898\" href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/11\/Program-konferencije-Zenski-stav-za-sustav.pdf\">\u017denski stav za sustav- program konferencije<\/a><\/div>\n\n\n\n<figure class=\"wp-block-gallery has-nested-images columns-default is-cropped wp-block-gallery-2 is-layout-flex wp-block-gallery-is-layout-flex\"><\/figure>","protected":false},"excerpt":{"rendered":"<p>U Tuheljskim toplicama 17. studenog odr\u017eana je zavr\u0161na konferencija projekta \u201e\u017denski stav za sustav\u201c &#8211; sveobuhvatna podr\u0161ka i osna\u017eivanje \u017eena s izazovima rijetkih bolesti.&nbsp; Rije\u010d je o projektu podr\u017eanom kroz Fond za aktivno gra\u0111anstvo, sredstvima Islanda, Lihten\u0161tajna i Norve\u0161ke u okviru EGP grantova koji je&#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":[1,17],"tags":[],"class_list":["post-3664","post","type-post","status-publish","format-standard","hentry","category-uncategorized","category-nacionalne-konferencije"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.0 - 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