{"id":5951,"date":"2026-02-10T10:53:42","date_gmt":"2026-02-10T08:53:42","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=5951"},"modified":"2026-02-10T14:01:37","modified_gmt":"2026-02-10T12:01:37","slug":"seamless-transition-support-models-and-policies-for-rare-diseases","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/seamless-transition-support-models-and-policies-for-rare-diseases\/","title":{"rendered":"Seamless Transition: Support Models and Policies for Rare Diseases"},"content":{"rendered":"

Introducing our new project: \u201cSeamless Transition: Support Models and Policies for Rare Diseases.\u201d This initiative focuses on improving the journey of young people with rare diseases as they move from paediatric care to adult healthcare services.<\/p>\n\n\n\n


The aim of the project is to gain a better understanding of the needs of young people and their families during this sensitive period, and to develop concrete solutions and recommendations for strengthening systemic support. As part of the project, we are conducting comprehensive research into the current situation, including data collection and analysis, as well as consultations with experts.<\/p>\n\n\n\n


A particular emphasis is placed on the development and implementation of a mentoring programme that will provide young people and their families with support through counselling, peer support, and access to reliable information.<\/p>\n\n\n\n


Projekt uklju\u010duje i izradu edukativnih i informativnih materijala, organizaciju sastanaka dionika, radionica i dijaloga o javnim politikama s ciljem oblikovanja konkretnih preporuka za unapre\u0111enje sustava zdravstvene skrbi.
Through visibility activities, media campaigns, and public events, we seek to ensure that the voices of people living with rare diseases are clearly heard and that their needs are recognised and addressed at a systemic level.<\/p>\n\n\n\n


The project is implemented as part of the AstraZeneca Young Health Programme Impact Fellowship.<\/p>\n\n\n

\n
\"\"<\/figure>\n<\/div>","protected":false},"excerpt":{"rendered":"

Introducing our new project \u201cSeamless Transition: Support Models and Policies for Rare Diseases.\u201d This initiative focuses on improving the journey of young people with rare diseases as they move from paediatric care to adult healthcare services.<\/p>","protected":false},"author":3,"featured_media":5952,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"content-type":"","footnotes":""},"categories":[1],"tags":[],"class_list":["post-5951","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"yoast_head":"\nTranzicija skrbi: modeli podr\u0161ke i javne mjere u podru\u010dju rijetkih bolesti - 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\/seamless-transition-support-models-and-policies-for-rare-diseases\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Tranzicija skrbi: modeli podr\u0161ke i javne mjere u podru\u010dju rijetkih bolesti - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"Predstavljamo na\u0161 novi projekt \u201cSeamless Transition: Support Models and Policies for Rare Diseases\u201d, usmjeren na unapre\u0111enje procesa tranzicije mladih osoba s rijetkim bolestima iz pedijatrijske u adultnu zdravstvenu skrb (skrb za odrasle). 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