{"id":705,"date":"2020-12-17T20:15:48","date_gmt":"2020-12-17T18:15:48","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?page_id=705"},"modified":"2020-12-22T14:25:13","modified_gmt":"2020-12-22T12:25:13","slug":"eu-fondovi","status":"publish","type":"page","link":"https:\/\/rijetke-bolesti.com\/en\/eu-fondovi\/","title":{"rendered":"EU Funds"},"content":{"rendered":"<p>General Information<\/p>\n\n\n\n<p><strong>Project title: <\/strong>Development of the Croatian Resource Centre for Rare Diseases<\/p>\n\n\n\n<p><strong>Project coordinator: <\/strong>Rare Diseases Croatia<\/p>\n\n\n\n<p><strong>Project partner: <\/strong>Dru\u0161tvo oboljelih od bulozne epidermolize<\/p>\n\n\n\n<p><strong>Duration: <\/strong>: July 1, 2020 \u2013 July 1, 2022<\/p>\n\n\n\n<p>Total Project Value:<strong> 1.306.323,82 kuna<\/strong><\/p>\n\n\n\n<p>Union through the European Social Fund in the amount of&nbsp;<strong> HRK 1,306,323.82.&nbsp;<\/strong><\/p>\n\n\n\n<p>Project Summary<\/p>\n\n\n\n<p>The purpose of the project is to improve the quality of life of children with rare diseases and their families by developing and enhancing a holistic approach to care and increasing the availability of social services.&nbsp;<\/p>\n\n\n\n<p>Between July 1, 2020 and July 1, 2022, the project included the implementation of the following activities:<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>Establishment of an online educational platform for rare diseases<\/li><li>Organization and delivery of four regional workshops on rare diseases for professionals<\/li><li>Delivery of 16 online training sessions for professionals working with people living with rare diseases<\/li><li>Training for staff in 34 primary and secondary schools<\/li><li>Development of the online \u201cRare Library\u201d with information on more than 100 rare diagnoses<\/li><li>Organization and delivery of four educational\u2013rehabilitation camps for children with rare diseases<\/li><li>Establishment of a theatre drama group for children with rare diseases<\/li><li>Implementation of 16 online courses for parents<\/li><li>Establishment of an occupational therapy counselling service<\/li><li>Production of six short documentary films on the social aspects of living with rare diseases<\/li><li>Organization and implementation of a media campaign on rare diseases<\/li><li>Workshops for parents of children with rare diseases<\/li><li>Promotion and visibility activities<\/li><li>Project management and administration<\/li><\/ul>\n\n\n\n<p>Objectives and Expected Results<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Phase 1<\/h2>\n\n\n\n<h5 class=\"wp-block-heading\">Objective:<\/h5>\n\n\n\n<p>Improve networking and strengthen the capacities of professionals in the fields of social care and education who work with children affected by rare diseases<\/p>\n\n\n\n<h5 class=\"wp-block-heading\"><strong>Results \/ Indicators:<\/strong><\/h5>\n\n\n\n<ul class=\"wp-block-list\"><li>2 social service providers implementing the project<\/li><li>600 professionals participated in training<\/li><li>50 professionals trained in the field of social services<\/li><li>34 primary and secondary schools where training sessions were held<\/li><\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">Phase 2<\/h2>\n\n\n\n<h5 class=\"wp-block-heading\"><strong>Objective:<\/strong><\/h5>\n\n\n\n<p>Enhance the social inclusion of children living with rare diseases and empower their parents to provide developmental and educational support<\/p>\n\n\n\n<h5 class=\"wp-block-heading\"><strong>Results \/ Indicators:<\/strong><\/h5>\n\n\n\n<ul class=\"wp-block-list\"><li>120 young people (up to 25 years) included<\/li><li>250 parents participated in educational programmes<\/li><\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">Phase 3<\/h2>\n\n\n\n<h5 class=\"wp-block-heading\"><strong>Objective:<\/strong><\/h5>\n\n\n\n<p>Raise public awareness about the challenges of living with rare diseases, promote acceptance of diversity, and foster a culture of tolerance<\/p>\n\n\n\n<h5 class=\"wp-block-heading\"><strong>Results \/ Indicators:<\/strong><\/h5>\n\n\n\n<ul class=\"wp-block-list\"><li>20 awareness-raising activities \/ rare disease campaigns implemented<\/li><\/ul>","protected":false},"excerpt":{"rendered":"<p>Op\u0107i podaci Naziv projekta: Razvoj Hrvatskog resursnog centra za rijetke bolesti Nositelj projekta: Hrvatski savez za rijetke bolesti Partner na projektu: Dru\u0161tvo oboljelih od bulozne epidermolize Trajanje: od 1. srpnja 2020. godine do 1. srpnja 2022. godine. Ukupna vrijednost projekta je 1.306.323,82 kuna Projekt je&#8230;<\/p>","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"content-type":"","footnotes":""},"class_list":["post-705","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>EU fondovi - 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\/eu-fondovi\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"EU fondovi - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"Op\u0107i podaci Naziv projekta: Razvoj Hrvatskog resursnog centra za rijetke bolesti Nositelj projekta: Hrvatski savez za rijetke bolesti Partner na projektu: Dru\u0161tvo oboljelih od bulozne epidermolize Trajanje: od 1. srpnja 2020. godine do 1. srpnja 2022. godine. 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