{"id":43789,"date":"2021-07-18T15:16:14","date_gmt":"2021-07-18T14:16:14","guid":{"rendered":"https:\/\/radioljubuski.ba\/?p=43789"},"modified":"2021-07-18T15:16:15","modified_gmt":"2021-07-18T14:16:15","slug":"osnivanje-saveza-za-rijetke-bolesti-na-razini-fbih-pomoglo-bi-mnogima","status":"publish","type":"post","link":"https:\/\/radioljubuski.ba\/index.php\/2021\/07\/18\/osnivanje-saveza-za-rijetke-bolesti-na-razini-fbih-pomoglo-bi-mnogima\/","title":{"rendered":"Osnivanje Saveza za rijetke bolesti na razini FBiH pomoglo bi mnogima"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Sastanak Nadzornog odbora na projektu \u201eDoprinos OCD mre\u017ea pobolj\u0161anju svakodnevnog \u017eivota ljudi oboljelih od rijetkih bolesti\u201c koji financira Europska unija, a implementira Asocijacija XY, sastavljen od predstavnika i predstavnica entitetskih ministarstava zdravstva, zdravstvenih profesionalaca i udru\u017eenja koja djeluju u oblasti rijetkih bolesti odr\u017ean je u Banja Luci.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><br>Na sastanku su prezentirani rezultati projektnih aktivnosti koje su implementirane u proteklih \u0161est mjeseci, a govorilo se i o aktivnostima \u010dija je implementacija planirana do kraja 2021. godine. Uloga Nadzornog odbora je supervizija implementacije projekta i osiguranje strate\u0161kog vodstva kako bi se na najkvalitetniji na\u010din osiguralo postizanje projektnog cilja, a to je ja\u010danje mre\u017ea organizacija civilnog dru\u0161tva i njihovih kapaciteta. Nadzorni odbor \u010dine predsjednica Udru\u017eenja za cisti\u010dnu fibrozu Bosne i Hercegovine Elvira Muhi\u0107, dr. Marina Bera iz Federalnog ministarstva zdravstva, dr. Milan Latinovi\u0107 iz Ministarstva zdravlja i socijalne za\u0161tite RS, dr. Jasminka Vu\u010dkovi\u0107 iz Fonda solidarnosti za dijagnostiku i lije\u010denje oboljenja, stanja i ozljeda djece u inozemstvu RS i dr. Mensuda Hasanhod\u017ei\u0107 ekspertica za rijetke bolesti sa UKC Tuzla.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><br>Multisektorska i me\u0111uinstitucionalna suradnja u zdravstvenoj oblasti oba entiteta, uklju\u010denost udru\u017eenja, razmjena informacija i primjeri dobre prakse svrha su budu\u0107ih sastanaka Nadzornog odbora, jer samo kontinuirana i sveobuhvatna briga za osobe s rijetkim oboljenjima mo\u017ee podi\u0107i kvalitetu \u017eivota osoba s rijetkim bolestima i osigurati kvalitetnu zdravstvenu za\u0161titu. Prema rije\u010dima predsjednice Udru\u017eenja za cisti\u010dnu fibrozu Bosne i Hercegovine i \u010dlanice Nadzornog odbora Elvire Muhi\u0107, ovo udru\u017eenje aktivno sudjeluje u implementaciji projekta \u201eDoprinos OCD mre\u017ea pobolj\u0161anju svakodnevnog \u017eivota ljudi oboljelih od rijetkih bolesti\u201c za \u010dije rezultate smatraju da \u0107e biti korisni krajnjim korisnicima. -Razmjena informacija me\u0111u korisnicima usluga iz razli\u010ditih \u017eupanija na razini Federacije BiH je prva stvar koja \u0107e biti omogu\u0107ena putem ovog projekta, a koja za nas ima neprocjenjiv zna\u010daj. Tako\u0111er, identifikacija udru\u017eenja u Bosni i Hercegovini i sustav informacija o njihovim kapacitetima i radu sada \u0107e biti dostupne na jednom mjestu i postojat \u0107e sinkronizacija u njihovom zajedni\u010dkom djelovanju, kazala je Muhi\u0107. Na sastanku se govorilo i o osnivanju Saveza za rijetke bolesti na razini Federacije Bosne i Hercegovine. -Osnivanje Saveza za rijetke bolesti na razini Federacije Bosne i Hercegovine koje je planirano u okviru ovog projekta \u0107e uveliko pomo\u0107i korisnicima udru\u017eenja, najvi\u0161e iz razloga \u0161to nekada osoba oboljelih od odre\u0111enih rijetkih bolesti ima jako malo, nekad \u010dak jedno ili dvoje, i oni nemaju mogu\u0107nost da formiraju samostalno udru\u017eenje bilo na razini \u017eupanije, a osobito na jo\u0161 ve\u0107oj razini. Projekt \u0107e pomo\u0107i da se osobe s rijetkom bolesti usmjere na pravo mjesto i da ne ostanu zapostavljene u sustavu zdravstvene za\u0161tite a u cijelom procesu veliku ulogu imat \u0107e Nadzorni odbor koji \u0107e osigurati podr\u0161ku unutar sustava zaklju\u010dila je Muhi\u0107.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Izvor:pogled.ba<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Sastanak Nadzornog odbora na projektu \u201eDoprinos OCD mre\u017ea pobolj\u0161anju svakodnevnog \u017eivota ljudi oboljelih od rijetkih bolesti\u201c koji financira Europska unija, a implementira Asocijacija XY, sastavljen od predstavnika i predstavnica entitetskih ministarstava zdravstva, zdravstvenih profesionalaca i udru\u017eenja koja djeluju u oblasti rijetkih bolesti odr\u017ean je u Banja Luci.&nbsp; Na sastanku su prezentirani rezultati projektnih aktivnosti koje [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":43790,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-43789","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-bihiregija"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - 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