{"id":668,"date":"2020-12-17T19:57:07","date_gmt":"2020-12-17T17:57:07","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?page_id=668"},"modified":"2025-04-02T10:39:01","modified_gmt":"2025-04-02T08:39:01","slug":"dokumentarni-filmovi","status":"publish","type":"page","link":"http:\/\/rijetke-bolesti.com\/en\/rijetke-bolesti\/dokumentarni-filmovi\/","title":{"rendered":"Documentary Films"},"content":{"rendered":"<h3 class=\"wp-block-heading\"><strong>Life with Spinal Muscular Atrophy<\/strong><\/h3>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Life with Spinal Muscular Atrophy\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/xLNlcInUvnE?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Starting a Family<\/strong><\/h3>\n\n\n\n<p>Having a child is often said to be the most beautiful thing that can happen to a person. However, this decision is not easy for everyone. Some rare diseases are genetic, and for future parents who themselves live with a rare disease, this becomes one of the biggest decisions of their lives.\u00a0<\/p>\n\n\n\n<p>This important topic is discussed by Prof. Dr. Sc. Ivo Bari\u0107, who, with his years of experience, strives to provide answers to all questions. And that each person, in their own way, shapes their destiny is best illustrated by the story of a brave mother and the happiest moment of her life.<\/p>\n\n\n\n<p>The project was co-financed by the European Union from the European Social Fund<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Starting a Family\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/KF5oqcYJx8U?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Challenges of Parenthood<\/strong><\/h3>\n\n\n\n<p>These extraordinary people\u2014super parents and super kids\u2014live day by day in every sense of the word. From our superheroes, you can hear firsthand how they navigate a reality that is not always ready to accommodate them.<\/p>\n\n\n\n<p>Kako se ovi hrabri ljudi bore s\u00a0 birokracijom, izazovima na poslu, obiteljskim situacijama i pogledima na cesti? Razlikuje li se njihov \u017eivot od \u017eivota bilo koje druge obitelji i \u0161to ovi roditelji \u017eele za svoju djecu? <\/p>\n\n\n\n<p>Find out in the short documentary we have prepared for you as part of Rare Disease Awareness Month.<\/p>\n\n\n<p><iframe loading=\"lazy\" title=\"Challenges of Parenthood\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/5s7eD0MSbY4?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<h4>\u00a0<\/h4>\n<p>\u00a0<\/p>\n<p>\u00a0<\/p>\n<h3><strong>Life with a Rare Disease<\/strong><\/h3>\n<p>That life with a rare diagnosis can be both joyful and challenging is something many of our members can attest to.<br \/>These incredible individuals are an endless source of inspiration and proof that a happy and fulfilling life is possible, even with a rare diagnosis. They share their stories of the strength they have found within themselves despite everything and remind us of the importance of seeing and recognizing potential in others.<\/p>\n<p><iframe loading=\"lazy\" title=\"Life with a Rare Disease\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/FMquL0HRq40?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<h4>\u00a0<\/h4>\n<p>\u00a0<\/p>\n<p>\u00a0<\/p>\n<h3><strong>Rare Diseases and the Job Market<\/strong><\/h3>\n<p>The job market is challenging even if you are in perfect health, but when you have a rare diagnosis, things become even more complicated.<\/p>\n<p>Two inspiring women in this documentary have experienced both good and difficult phases of their illness, yet they have turned their diagnosis into a tool to help others. Despite everything, they remain cheerful and optimistic, encouraging you to stay strong and never give up on yourself!<\/p>\n<p><iframe loading=\"lazy\" title=\"Rare Diseases and the Job Market\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/fm_eZ5ZCdRc?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<h4>\u00a0<\/h4>\n<p>\u00a0<\/p>\n<p>\u00a0<\/p>\n<h3><strong>Access to Education<\/strong><\/h3>\n<p>Every child has the right to an education! But is that truly the case for children with rare diagnoses?<\/p>\n<p>In this short documentary, we explore how children with rare diseases navigate the education system.<\/p>\n<p>Watch the story of our brave parents, as well as the inspiring journey of one of our members through the education system. Our mission is to ensure that all children with rare diseases are seen and recognized<\/p>\n<p><iframe loading=\"lazy\" title=\"Access to Education\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/nzYKAwX0b6w?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<h4>\u00a0<\/h4>\n<p>\u00a0<\/p>\n<p>\u00a0<\/p>\n<h3><strong>Access to Social Services<\/strong><\/h3>\n<p>Besides living with a rare disease, our community members face many additional challenges. Their journey takes them through countless doors\u2014from the long path to a diagnosis to endless paperwork and rejections. The rare disease remains, but rights are not always granted.\n\nIn one county, a person with a rare diagnosis may receive full support, while in a neighboring county, they may receive none at all. Although the system is more inclusive and compassionate than many others, it still fails to meet the needs of everyone.<\/p>\n<p>In this documentary, we share the stories of two courageous women\u2014one fighting for her child, the other for herself. They both know what they want: the life they deserve. Sometimes, it seems that living with a rare diagnosis is easier than fighting against inequality in the system.<\/p>\n<p><iframe loading=\"lazy\" title=\"Access to Social Services\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/KZmhKW6z940?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<h4>\u00a0<\/h4>\n<p>\u00a0<\/p>\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>","protected":false},"excerpt":{"rendered":"<p>\u017divot sa spinalnom mi\u0161i\u0107nom atrofijom Zasnivanje vlastite obitelji Dobiti dijete, mnogi ka\u017eu najljep\u0161e je \u0161to se osobi mo\u017ee dogoditi. No, nije svima ta odluka laka. Neke rijetke bolesti genetske su i pred budu\u0107im roditeljima, koji i sami boluju od rijetkih bolesti, najve\u0107a je odluka u&#8230;<\/p>","protected":false},"author":2,"featured_media":0,"parent":664,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"content-type":"","footnotes":""},"class_list":["post-668","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Dokumentarni filmovi - 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\/rijetke-bolesti\/dokumentarni-filmovi\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Dokumentarni filmovi - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"\u017divot sa spinalnom mi\u0161i\u0107nom atrofijom Zasnivanje vlastite obitelji Dobiti dijete, mnogi ka\u017eu najljep\u0161e je \u0161to se osobi mo\u017ee dogoditi. No, nije svima ta odluka laka. Neke rijetke bolesti genetske su i pred budu\u0107im roditeljima, koji i sami boluju od rijetkih bolesti, najve\u0107a je odluka u...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/rijetke-bolesti.com\/en\/rijetke-bolesti\/dokumentarni-filmovi\/\" \/>\n<meta property=\"og:site_name\" content=\"Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"article:modified_time\" content=\"2025-04-02T08:39:01+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data1\" 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\/rijetke-bolesti\/dokumentarni-filmovi\/\",\"url\":\"https:\/\/rijetke-bolesti.com\/rijetke-bolesti\/dokumentarni-filmovi\/\",\"name\":\"Dokumentarni filmovi - Hrvatski savez za rijetke bolesti\",\"isPartOf\":{\"@id\":\"https:\/\/rijetke-bolesti.com\/#website\"},\"datePublished\":\"2020-12-17T17:57:07+00:00\",\"dateModified\":\"2025-04-02T08:39:01+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/rijetke-bolesti.com\/rijetke-bolesti\/dokumentarni-filmovi\/#breadcrumb\"},\"inLanguage\":\"en-GB\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/rijetke-bolesti.com\/rijetke-bolesti\/dokumentarni-filmovi\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/rijetke-bolesti.com\/rijetke-bolesti\/dokumentarni-filmovi\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/rijetke-bolesti.com\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Rijetke bolesti\",\"item\":\"https:\/\/rijetke-bolesti.com\/rijetke-bolesti\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"Dokumentarni filmovi\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/rijetke-bolesti.com\/#website\",\"url\":\"https:\/\/rijetke-bolesti.com\/\",\"name\":\"Hrvatski savez za rijetke bolesti\",\"description\":\"Za\u0161tita i unapre\u0111enje kvalitete \u017eivota osoba oboljelih\u00a0 od rijetkih bolesti\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/rijetke-bolesti.com\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-GB\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Dokumentarni filmovi - Hrvatski savez za rijetke bolesti","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/rijetke-bolesti.com\/en\/rijetke-bolesti\/dokumentarni-filmovi\/","og_locale":"en_GB","og_type":"article","og_title":"Dokumentarni filmovi - Hrvatski savez za rijetke bolesti","og_description":"\u017divot sa spinalnom mi\u0161i\u0107nom atrofijom Zasnivanje vlastite obitelji Dobiti dijete, mnogi ka\u017eu najljep\u0161e je \u0161to se osobi mo\u017ee dogoditi. No, nije svima ta odluka laka. Neke rijetke bolesti genetske su i pred budu\u0107im roditeljima, koji i sami boluju od rijetkih bolesti, najve\u0107a je odluka u...","og_url":"https:\/\/rijetke-bolesti.com\/en\/rijetke-bolesti\/dokumentarni-filmovi\/","og_site_name":"Hrvatski savez za rijetke bolesti","article_modified_time":"2025-04-02T08:39:01+00:00","twitter_card":"summary_large_image","twitter_misc":{"Estimated reading time":"3 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/rijetke-bolesti.com\/rijetke-bolesti\/dokumentarni-filmovi\/","url":"https:\/\/rijetke-bolesti.com\/rijetke-bolesti\/dokumentarni-filmovi\/","name":"Dokumentarni filmovi - Hrvatski savez za rijetke bolesti","isPartOf":{"@id":"https:\/\/rijetke-bolesti.com\/#website"},"datePublished":"2020-12-17T17:57:07+00:00","dateModified":"2025-04-02T08:39:01+00:00","breadcrumb":{"@id":"https:\/\/rijetke-bolesti.com\/rijetke-bolesti\/dokumentarni-filmovi\/#breadcrumb"},"inLanguage":"en-GB","potentialAction":[{"@type":"ReadAction","target":["https:\/\/rijetke-bolesti.com\/rijetke-bolesti\/dokumentarni-filmovi\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/rijetke-bolesti.com\/rijetke-bolesti\/dokumentarni-filmovi\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/rijetke-bolesti.com\/"},{"@type":"ListItem","position":2,"name":"Rijetke bolesti","item":"https:\/\/rijetke-bolesti.com\/rijetke-bolesti\/"},{"@type":"ListItem","position":3,"name":"Dokumentarni filmovi"}]},{"@type":"WebSite","@id":"https:\/\/rijetke-bolesti.com\/#website","url":"https:\/\/rijetke-bolesti.com\/","name":"Hrvatski savez za rijetke bolesti","description":"Za\u0161tita i unapre\u0111enje kvalitete \u017eivota osoba oboljelih\u00a0 od rijetkih bolesti","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/rijetke-bolesti.com\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-GB"}]}},"_links":{"self":[{"href":"http:\/\/rijetke-bolesti.com\/en\/wp-json\/wp\/v2\/pages\/668","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/rijetke-bolesti.com\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"http:\/\/rijetke-bolesti.com\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"http:\/\/rijetke-bolesti.com\/en\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"http:\/\/rijetke-bolesti.com\/en\/wp-json\/wp\/v2\/comments?post=668"}],"version-history":[{"count":25,"href":"http:\/\/rijetke-bolesti.com\/en\/wp-json\/wp\/v2\/pages\/668\/revisions"}],"predecessor-version":[{"id":4648,"href":"http:\/\/rijetke-bolesti.com\/en\/wp-json\/wp\/v2\/pages\/668\/revisions\/4648"}],"up":[{"embeddable":true,"href":"http:\/\/rijetke-bolesti.com\/en\/wp-json\/wp\/v2\/pages\/664"}],"wp:attachment":[{"href":"http:\/\/rijetke-bolesti.com\/en\/wp-json\/wp\/v2\/media?parent=668"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}