{"id":1592,"date":"2021-05-06T15:25:49","date_gmt":"2021-05-06T13:25:49","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?page_id=1592"},"modified":"2025-06-03T11:49:38","modified_gmt":"2025-06-03T09:49:38","slug":"mrmsosp","status":"publish","type":"page","link":"https:\/\/rijetke-bolesti.com\/en\/projekti\/mrmsosp\/","title":{"rendered":"Ministry of Labour, Pension System, Family and Social Policy"},"content":{"rendered":"<h3 class=\"wp-block-heading\">Rare Disease Resource Center<\/h3>\n\n\n\n<p><strong>Project partner:<\/strong> Zavod za socijalni rad \u2013 podru\u010dni ured Pula<\/p>\n\n\n\n<p><strong>Razdoblje provedbe:<\/strong> 1.5.2023. \u2013 30.5.2026.<\/p>\n\n\n\n<p><strong>Approved amount:<\/strong> 26.500,00 \u20ac za prvu godinu provedbe; 32.500 \u20ac za drugu godinu provedbe, 42.500,00 \u20ac za tre\u0107u godinu provedbe<\/p>\n\n\n\n<p><br><strong>Cilj programa<\/strong> je \u0161irenje mre\u017ee specijaliziranih usluga za pojedince i obitelji \u010diji su \u010dlanovi djeca s te\u0161ko\u0107ama u razvoju i odrasle osobe s invalidtetom, a te\u0161ko\u0107e\/invaliditet javljaju se kao posljedica rijetkih bolesti.<br><\/p>\n\n\n\n<p><strong>Opis programa:<\/strong><br>Program se nastavlja na dosada\u0161nji rad, projekte i programe Hrvatskog saveza za rijetke bolesti. Holisti\u010dkim pristupom obuhva\u0107eni su razli\u010diti vidovi podr\u0161ke \u2013 psiholo\u0161ka podr\u0161ka i savjetovanje (individualno i grupno), pomo\u0107 i podr\u0161ka u savjetovanju o socijalnim pravima i njihovom ostvarivanju, radnoterapijsko savjetovanje te odgovaranje na upite medicinskog karaktera (tuma\u010denje nalaza, informacije o pretragama i specijalistima za odre\u0111enu dijagnozu, savjeti o mogu\u0107em djelovanju i primjeni odre\u0111enih lijekova pri odre\u0111enoj dijagnozi, prilago\u0111enoj prehrani) kroz volonterski anga\u017eman medicinskog tima \u2013 Studenstske linije za rijetke bolesti. \u00a0<br>Aktivnost psihosocijalne podr\u0161ke bit \u0107e nadogra\u0111ena uklju\u010divanjem volontera (studenata psihologije, socijalnog rada, edukacijske rehabilitacije i srodnih pomaga\u010dkih zanimanja) u proces pru\u017eanja psihosocijalne podr\u0161ke oboljelima od rijetkih bolesti i \u010dlanovima njihovih obitelji.<br>Nadalje, kako bi oboljelima i \u010dlanovima njihovih obitelji bila omogu\u0107ena \u0161to kvalitetnija podr\u0161ka u njihovim sredinama, kroz projekt Savez \u0107e kontinuirano sura\u0111ivati s razli\u010ditim ustanovama i institucijama (socijalne, zdravstvene, odgojno-obrazovne), organizirati konferencije, obilje\u017eavanje Me\u0111unarodnog dana rijetkih bolesti i razli\u010dite edukativne doga\u0111aje kako bi se stru\u010dnjacima pribli\u017eila problematika s kojom se osobe s rijetkim bolestima i njihove osobe suo\u010davaju, ali i kako bi ih se senzibiliziralo te kako bi stekli vi\u0161e znanja i informacija o pristupu oboljelima. Osim stru\u010dnjaka, kroz medijske nastupe, objave na web stranici te na profilima dru\u0161tvenih mre\u017ea Saveza, senzibilizirat \u0107e se i \u0161ira javnost u svrhu poticanja \u0161to ve\u0107e dru\u0161tvene uklju\u010denosti djece i mladih s te\u0161ko\u0107ama te odraslih osoba s invaliditetom, kao posljedicom rijetkih bolesti. \u00a0Sve navedene aktivnosti odvijaju se kontinuirano kroz provedbeno razdoblje.<\/p>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"366\" height=\"244\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2021\/02\/MRMSOSP_logo_v-1.jpg\" alt=\"\" class=\"wp-image-1222\" style=\"width:454px;height:303px\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2021\/02\/MRMSOSP_logo_v-1.jpg 366w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2021\/02\/MRMSOSP_logo_v-1-300x200.jpg 300w\" sizes=\"auto, (max-width: 366px) 100vw, 366px\" \/><\/figure>\n<\/div>\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">Expanding the Support Center for People Living with Rare Diseases and Their Families<\/h3>\n\n\n<ul>\n<li data-leveltext=\"o\" data-font=\"Courier New\" data-listid=\"15\" aria-setsize=\"-1\" data-aria-posinset=\"2\" data-aria-level=\"1\"><span data-contrast=\"auto\"><strong>Duration:<\/strong> 1.6.2020. \u2013 31.5.2023.\u202f<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"o\" data-font=\"Courier New\" data-listid=\"16\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span data-contrast=\"auto\"><strong>Total Value:<\/strong> 600.000 HRK\u202f<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"o\" data-font=\"Courier New\" data-listid=\"16\" aria-setsize=\"-1\" data-aria-posinset=\"4\" data-aria-level=\"1\"><span data-contrast=\"auto\">The objective of the project is to continue developing and expanding networks of specialized services for children with developmental disabilities and persons with disabilities as a result of rare diseases, as well as their families.<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><\/li>\n<\/ul>\n<p><span data-contrast=\"auto\">Key Objectives:<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\"> :<\/span><\/p>\n<ul>\n<li data-leveltext=\"o\" data-font=\"Courier New\" data-listid=\"16\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"2\"><span data-contrast=\"auto\">Improved access to essential information, psychosocial support, and social inclusion services for families of children with developmental disabilities and people with rare disease-related disabilities throughout Croatia.<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"o\" data-font=\"Courier New\" data-listid=\"16\" aria-setsize=\"-1\" data-aria-posinset=\"2\" data-aria-level=\"2\"><span data-contrast=\"auto\">Enhanced quality of services through in-depth analysis of beneficiary needs and profiles, enabling the development of innovative, personalized social services tailored to the rare disease community.<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"o\" data-font=\"Courier New\" data-listid=\"16\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"2\"><span data-contrast=\"auto\">Empowerment and social inclusion of children and individuals with disabilities through psychosocial support, inclusive playgroups for children to strengthen social skills, and occupational therapy activities for adults.<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"o\" data-font=\"Courier New\" data-listid=\"16\" aria-setsize=\"-1\" data-aria-posinset=\"4\" data-aria-level=\"2\"><span data-contrast=\"auto\">Strengthening collaboration with leading institutions, local authorities, and civil society organizations to better identify new beneficiaries, refer them to the Croatian Alliance for Rare Diseases, and ensure timely, appropriate support and improved service delivery at the local level.<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><\/li>\n<\/ul>","protected":false},"excerpt":{"rendered":"<p>Resursni centar za rijetke bolesti Partner na projektu: Zavod za socijalni rad \u2013 podru\u010dni ured Pula Razdoblje provedbe: 1.5.2023. \u2013 30.5.2026. Odobreni iznos: 26.500,00 \u20ac za prvu godinu provedbe; 32.500 \u20ac za drugu godinu provedbe, 42.500,00 \u20ac za tre\u0107u godinu provedbe Cilj programa je \u0161irenje&#8230;<\/p>","protected":false},"author":2,"featured_media":0,"parent":1590,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"content-type":"","footnotes":""},"class_list":["post-1592","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>Ministarstvo rada, mirovinskog sustava, obitelji i socijalne politike - 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\/projekti\/mrmsosp\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Ministarstvo rada, mirovinskog sustava, obitelji i socijalne politike - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"Resursni centar za rijetke bolesti Partner na projektu: Zavod za socijalni rad \u2013 podru\u010dni ured Pula Razdoblje provedbe: 1.5.2023. \u2013 30.5.2026. 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