{"id":5954,"date":"2026-02-10T12:53:22","date_gmt":"2026-02-10T10:53:22","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?page_id=5954"},"modified":"2026-11-03T10:46:46","modified_gmt":"2026-11-03T08:46:46","slug":"tranzicija-skrbi-modeli-podrske-i-javne-mjere-u-podrucju-rijetkih-bolesti","status":"publish","type":"page","link":"https:\/\/rijetke-bolesti.com\/en\/projekti\/tranzicija-skrbi-modeli-podrske-i-javne-mjere-u-podrucju-rijetkih-bolesti\/","title":{"rendered":"Seamless Transition: Support Models and Policies for RD"},"content":{"rendered":"<p class=\"wp-block-paragraph\">S ponosom predstavljamo novi materijal nastao u sklopu projekta <em>\u201eSeamless Transition: Support Models and Policies for Rare Diseases&#8221;:<\/em> prakti\u010dni vodi\u010d pod nazivom \u201eMentorstvo u tranziciji \u2013 vodi\u010d za udruge pacijenata\u201c.<br>Tranzicija iz pedijatrijske u adultnu zdravstvenu skrb jedan je od izazovnijih perioda u \u017eivotu mladih osoba s rijetkim bolestima i njihovih obitelji. Kako bismo pomogli udrugama pacijenata u pru\u017eanju \u0161to kvalitetnije podr\u0161ke svojim \u010dlanovima, ovaj vodi\u010d donosi konkretne smjernice o tome kako pokrenuti i voditi programe <em>peer<\/em> (vr\u0161nja\u010dkog) mentorstva.<br>Kroz <em>peer<\/em> mentorstvo, mladi koji prolaze ili su ve\u0107 pro\u0161li proces tranzicije mogu dobiti neprocjenjivu podr\u0161ku, savjete i iskustva od svojih vr\u0161njaka, \u0161to im olak\u0161ava snala\u017eenje u sustavu zdravstvene skrbi za odrasle.<br>Vodi\u010d mo\u017eete jednostavno preuzeti i primijeniti u radu va\u0161e udruge.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Projekt <em>\u201eSeamless Transition\u201c<\/em> usmjeren je na unapre\u0111enje procesa tranzicije mladih s rijetkim bolestima i stvaranje boljih modela podr\u0161ke i politika. Provodi se u sklopu programa AstraZeneca Young Health Programme Impact Fellowship.<\/p>\n\n\n\n<div style=\"height:30px\" 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\/2019\/03\/Mentorstvo-u-tranziciji-vodic-za-udruge.pdf\" type=\"application\/pdf\" style=\"width:100%;height:600px\" aria-label=\"Embed of &lt;strong&gt;Mentorstvo u tranziciji - vodi\u010d za udruge&lt;\/strong&gt;.\"><\/object><a id=\"wp-block-file--media-bcae7b0e-e899-4920-81ba-a8a052676fee\" href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2019\/03\/Mentorstvo-u-tranziciji-vodic-za-udruge.pdf\"><strong>Mentorstvo u tranziciji &#8211; vodi\u010d za udruge<\/strong><\/a><a href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2019\/03\/Mentorstvo-u-tranziciji-vodic-za-udruge.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-bcae7b0e-e899-4920-81ba-a8a052676fee\">Download<\/a><\/div>\n\n\n\n<div style=\"height:30px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<hr class=\"wp-block-separator aligncenter has-alpha-channel-opacity\"\/>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">U sklopu projekta <strong>&#8220;Seamless transition: Support models and policies for rare diseases&#8221;<\/strong> izra\u0111eni su novi edukativni i prakti\u010dni materijali namijenjeni podr\u0161ci u procesu tranzicije zdravstvene skrbi mladih s rijetkim bolestima.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Prijelaz iz sustava pedijatrijske u adultnu zdravstvenu skrb predstavlja iznimno va\u017eno i osjetljivo razdoblje u \u017eivotu mladih i njihovih obitelji. Kako bi se osigurao kontinuitet kvalitetne skrbi, smanjila neizvjesnost i olak\u0161ala komunikacija izme\u0111u pacijenata, obitelji i zdravstvenih djelatnika, kreirali smo paket od <strong>5 specijaliziranih materijala<\/strong>:<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><br>Pregled dostupnih materijala:<br><strong>1. Letak za zdravstvene djelatnike u pedijatrijskoj skrbi &#8211;<\/strong> Predstavlja podr\u0161ku pedijatrijskim timovima u informiranju i pripremi mladih pacijenata i njihovih obitelji za nadolaze\u0107i proces tranzicije.<br><strong>2. Vodi\u010d za zdravstvene djelatnike u adultnoj zdravstvenoj skrbi &#8211;<\/strong> Pru\u017ea smjernice i va\u017ene informacije lije\u010dnicima i osoblju u adultnom sustavu kako bi se osigurao \u0161to lak\u0161i prihvat te razumijevanje specifi\u010dnih potreba mladih s rijetkim bolestima. &#8211;<br><strong>3. Bro\u0161ura za roditelje \u010dije dijete ulazi u tranziciju skrbi &#8211;<\/strong> Vodi\u010d namijenjen roditeljima, s prakti\u010dnim savjetima i informacijama o tome kako podr\u017eati dijete kroz sve korake prijelaza u adultnu skrb.<br>\u2022 <strong>4. Zdravstvena putovnica \u2013 Individualni plan tranzicije za mlade &#8211;<\/strong> Personalizirani alat kreiran za mlade, koji im omogu\u0107uje aktivno sudjelovanje u vo\u0111enju vlastitog zdravstvenog kartona i osamostaljivanje u brizi o zdravlju.<br>\u2022 <strong>5. Protokol tranzicije &#8211;<\/strong> Zajedni\u010dki protokol za zdravstvene djelatnike i obitelji koji definira jasne korake i me\u0111usobnu suradnju kako bi se osigurala sigurna i uspje\u0161na tranzicija.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Preuzimanje i prilagodba materijala<br>Svi materijali dostupni su za besplatno preuzimanje u PDF formatu:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Preuzmite Letak za pedijatrijsku skrb (PDF)<\/li>\n<\/ul>\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\/2026\/10\/1.-ULOGA-PEDIJATRIJSKIH-SPECIJALISTA.pdf\" type=\"application\/pdf\" style=\"width:100%;height:600px\" aria-label=\"Embed of &lt;strong&gt;1. ULOGA PEDIJATRIJSKIH SPECIJALISTA&lt;\/strong&gt;.\"><\/object><a id=\"wp-block-file--media-7a1c5536-7323-4929-bd99-b69d92d49646\" href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/10\/1.-ULOGA-PEDIJATRIJSKIH-SPECIJALISTA.pdf\"><strong>1. ULOGA PEDIJATRIJSKIH SPECIJALISTA<\/strong><\/a><a href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/10\/1.-ULOGA-PEDIJATRIJSKIH-SPECIJALISTA.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-7a1c5536-7323-4929-bd99-b69d92d49646\">Download<\/a><\/div>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Preuzmite Vodi\u010d za adultnu skrb (PDF)<\/li>\n<\/ul>\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\/2019\/03\/2.-PRIMANJE-PACIJENTA-S-RB.pdf\" type=\"application\/pdf\" style=\"width:100%;height:600px\" aria-label=\"Embed of &lt;strong&gt;2. PRIMANJE PACIJENTA S RB&lt;\/strong&gt;.\"><\/object><a id=\"wp-block-file--media-be73548c-e25d-4002-bc35-28c61a3f8415\" href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2019\/03\/2.-PRIMANJE-PACIJENTA-S-RB.pdf\"><strong>2. PRIMANJE PACIJENTA S RB<\/strong><\/a><a href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2019\/03\/2.-PRIMANJE-PACIJENTA-S-RB.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-be73548c-e25d-4002-bc35-28c61a3f8415\">Download<\/a><\/div>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Preuzmite Bro\u0161uru za roditelje (PDF)<\/li>\n<\/ul>\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\/2019\/03\/3.-PREPUSTANJE-KORMILA-TRANZICIJA-ZA-RODITELJESKRBNIKE.pdf\" type=\"application\/pdf\" style=\"width:100%;height:600px\" aria-label=\"Embed of &lt;strong&gt;3. PREPU&Scaron;TANJE KORMILA - TRANZICIJA ZA RODITELJESKRBNIKE&lt;\/strong&gt;.\"><\/object><a id=\"wp-block-file--media-cca9ca26-bcb4-4d67-973c-2b149d613447\" href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2019\/03\/3.-PREPUSTANJE-KORMILA-TRANZICIJA-ZA-RODITELJESKRBNIKE.pdf\"><strong>3. PREPU\u0160TANJE KORMILA &#8211; TRANZICIJA ZA RODITELJESKRBNIKE<\/strong><\/a><a href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2019\/03\/3.-PREPUSTANJE-KORMILA-TRANZICIJA-ZA-RODITELJESKRBNIKE.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-cca9ca26-bcb4-4d67-973c-2b149d613447\">Download<\/a><\/div>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Preuzmite Zdravstvenu putovnicu (PDF)<\/li>\n<\/ul>\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\/2019\/03\/4.-ZDRAVSTVENA-PUTOVNICA-I-TRANZICIJSKI-PLAN.pdf\" type=\"application\/pdf\" style=\"width:100%;height:600px\" aria-label=\"Embed of &lt;strong&gt;4. ZDRAVSTVENA PUTOVNICA I TRANZICIJSKI PLAN&lt;\/strong&gt;.\"><\/object><a id=\"wp-block-file--media-025db9a5-fc7a-4dd8-977a-dcd7ca552c86\" href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2019\/03\/4.-ZDRAVSTVENA-PUTOVNICA-I-TRANZICIJSKI-PLAN.pdf\"><strong>4. ZDRAVSTVENA PUTOVNICA I TRANZICIJSKI PLAN<\/strong><\/a><a href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2019\/03\/4.-ZDRAVSTVENA-PUTOVNICA-I-TRANZICIJSKI-PLAN.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-025db9a5-fc7a-4dd8-977a-dcd7ca552c86\">Download<\/a><\/div>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Preuzmite Protokol tranzicije (PDF)<\/li>\n<\/ul>\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\/2019\/03\/5.-PROTOKOL-TRANZICIJE-.pdf\" type=\"application\/pdf\" style=\"width:100%;height:600px\" aria-label=\"Embed of &lt;strong&gt;5. PROTOKOL TRANZICIJE&lt;\/strong&gt;.\"><\/object><a id=\"wp-block-file--media-f1ad99ec-c7b9-4586-b40d-dc9cc8321e1a\" href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2019\/03\/5.-PROTOKOL-TRANZICIJE-.pdf\"><strong>5. PROTOKOL TRANZICIJE<\/strong><\/a><a href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2019\/03\/5.-PROTOKOL-TRANZICIJE-.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-f1ad99ec-c7b9-4586-b40d-dc9cc8321e1a\">Download<\/a><\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Napomena:<\/strong> Svi materijali dostupni su i <strong>u<\/strong> Word formatu na upit, kako biste ih mogli prilagoditi i ure\u0111ivati prema svojim potrebama. Slobodno nam se obratite!<\/p>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Zahvala i partnerstvo<\/strong><br>Ovaj materijal nastao je kao dio <strong>AstraZeneca Young Health programme Impact Fellowshipa<\/strong>.<br>Posebno zahvaljujemo \u010dlanovima <strong>Rijetko dobrog foruma<\/strong> \u2013 foruma mladih s rijetkim bolestima, koji su svojim aktivnim sudjelovanjem, osobnim iskustvima i vrijednim uvidima iznimno doprinijeli izradi ovih materijala.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/02\/TRANZICIJA-vizual-1024x1024.png\" alt=\"\" class=\"wp-image-5952\"\/><\/figure>\n\n\n\n<div style=\"height:30px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<hr class=\"wp-block-separator aligncenter has-alpha-channel-opacity\"\/>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Project \u201cSeamless Transition: <em>Support Models and Policies for Rare Diseases<\/em>\u201d is focused on improving the transition process of young people with rare diseases from paediatric to adult healthcare.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><br>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<p class=\"wp-block-paragraph\"><br>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<p class=\"wp-block-paragraph\"><br>The project also includes the development of educational and informational materials, the organisation of stakeholder meetings, workshops, and public policy dialogues, with the aim of shaping concrete recommendations for improving the healthcare system.<br>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<p class=\"wp-block-paragraph\"><br>The project is implemented as part of the AstraZeneca Young Health Programme Impact Fellowship.<\/p>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>S ponosom predstavljamo novi materijal nastao u sklopu projekta \u201eSeamless Transition: Support Models and Policies for Rare Diseases&#8221;: prakti\u010dni vodi\u010d pod nazivom \u201eMentorstvo u tranziciji \u2013 vodi\u010d za udruge pacijenata\u201c.Tranzicija iz pedijatrijske u adultnu zdravstvenu skrb jedan je od izazovnijih perioda u \u017eivotu mladih osoba&#8230;<\/p>","protected":false},"author":3,"featured_media":6784,"parent":1590,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"content-type":"","footnotes":""},"class_list":["post-5954","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.0 - 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