{"id":56081,"date":"2024-09-12T16:57:50","date_gmt":"2024-09-12T14:57:50","guid":{"rendered":"https:\/\/ravnopravnost.gov.rs\/?p=56081"},"modified":"2024-09-12T16:58:44","modified_gmt":"2024-09-12T14:58:44","slug":"odrzana-peta-regionalna-konferencija-caring-for-rare-posvecena-unapredjenju-polozaja-osoba-sa-retkim-bolestima","status":"publish","type":"post","link":"https:\/\/ravnopravnost.gov.rs\/rs\/odrzana-peta-regionalna-konferencija-caring-for-rare-posvecena-unapredjenju-polozaja-osoba-sa-retkim-bolestima\/","title":{"rendered":"Odr\u017eana peta regionalna konferencija &#8220;Caring for Rare&#8221; posve\u0107ena unapre\u0111enju polo\u017eaja osoba sa retkim bolestima"},"content":{"rendered":"<p>Ravnopravan polo\u017eaj osoba sa retkim bolestima podrazumeva konstantno unapre\u0111ivanje zakonskog okvira i razvijanje sistema podr\u0161ke, kao i uklanjanje razli\u010ditih barijera i predrasuda prema obolelima, rekla je poverenica za za\u0161titu ravnopravnosti Brankica Jankovi\u0107 na otvaranju pete regionalne konferencije &#8220;Caring for Rare&#8221;. Skup koji je organizovala Nacionalna organizacija za retke bolesti Srbije NORBS, okupio je stru\u010dnjake iz regiona i sveta, s ciljem da se podigne svest o izazovima sa kojima se suo\u010davaju osobe sa retkim bolestima i njihove porodice.<\/p>\n<p>Jankovi\u0107 je istakla da se diskriminacija po osnovu zdravstvenog stanja svake godine nalazi u vrhu li\u010dnih svojstava zbog kojih gra\u0111ani Poverniku podnose pritu\u017ebe, ali da se neretko ovaj osnov \u00a0diskriminacije navodi u kombinaciji sa jo\u0161 nekim li\u010dnim svojstvom, kao na primer invaliditetom, starosnim dobom, rodnim identitetom ili polom, zbog \u010dega su te osobe u riziku od vi\u0161estruke diskriminacije.<\/p>\n<p>Poverenica je istakla da institucija Poverenika prepoznaje va\u017enost kontinuirane politi\u010dke volje za re\u0161avanje problema gra\u0111ana sa retkim bolestima, kao i da je izuzetno va\u017eno da se postignuti standardi i nivo ostvarenih prava stalno pove\u0107avaju. Tom prilikom, Jankovi\u0107 je pohvalila prakse kao \u0161to su uvo\u0111enje obaveznog skrininga za spinalnu mi\u0161i\u0107nu atrofiju u porodili\u0161tima \u0161irom Srbije, jednokratna finansijska pomo\u0107 za nabavku lekova, kao i nabavka \u201eoff-label\u201c lekova za pojedina\u010dne pacijente. Tako\u0111e, ukazala je na odre\u0111ene nedostatke u socijalnoj za\u0161titi za ovu grupu gra\u0111ana, kao i na potrebu za dodatnim prilago\u0111avanjem i standardizacijom usluga socijalne za\u0161tite.<\/p>\n<p>Na konferenciji su obra\u0111ene klju\u010dne teme poput uticaja retkih bolesti na porodice, posebno na bra\u0107u i sestre pacijenata, zna\u010daj prikupljanja i analize podataka o retkim bolestima, kao i specifi\u010dnosti bolesti sa kasnijim po\u010detkom. Konferencija je ponovo istakla va\u017enost saradnje izme\u0111u institucija, stru\u010dnjaka i civilnog sektora kako bi se pobolj\u0161ali uslovi za \u017eivot i le\u010denje osoba sa retkim bolestima, ali i unapredio kvalitet \u017eivota njihovih porodica.<\/p>\n\n ","protected":false},"excerpt":{"rendered":"<p>Ravnopravan polo\u017eaj osoba sa retkim bolestima podrazumeva konstantno unapre\u0111ivanje zakonskog okvira i razvijanje sistema podr\u0161ke, kao i uklanjanje razli\u010ditih barijera i predrasuda prema obolelima, rekla je poverenica za za\u0161titu ravnopravnosti Brankica Jankovi\u0107 na otvaranju pete regionalne konferencije &#8220;Caring for Rare&#8221;. Skup koji je organizovala Nacionalna organizacija za retke bolesti Srbije NORBS, okupio je stru\u010dnjake iz&#8230;<\/p>\n","protected":false},"author":17,"featured_media":56079,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[95],"tags":[],"class_list":["post-56081","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-vesti-lat"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Odr\u017eana peta regionalna konferencija &quot;Caring for Rare&quot; posve\u0107ena unapre\u0111enju polo\u017eaja osoba sa retkim bolestima &#8226; Poverenik za za\u0161titu ravnopravnosti<\/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:\/\/ravnopravnost.gov.rs\/rs\/odrzana-peta-regionalna-konferencija-caring-for-rare-posvecena-unapredjenju-polozaja-osoba-sa-retkim-bolestima\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Odr\u017eana peta regionalna konferencija &quot;Caring for Rare&quot; posve\u0107ena unapre\u0111enju polo\u017eaja osoba sa retkim bolestima &#8226; Poverenik za za\u0161titu ravnopravnosti\" \/>\n<meta property=\"og:description\" content=\"Ravnopravan polo\u017eaj osoba sa retkim bolestima podrazumeva konstantno unapre\u0111ivanje zakonskog okvira i razvijanje sistema podr\u0161ke, kao i uklanjanje razli\u010ditih barijera i predrasuda prema obolelima, rekla je poverenica za za\u0161titu ravnopravnosti Brankica Jankovi\u0107 na otvaranju pete regionalne konferencije &#8220;Caring for Rare&#8221;. Skup koji je organizovala Nacionalna organizacija za retke bolesti Srbije NORBS, okupio je stru\u010dnjake iz...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ravnopravnost.gov.rs\/rs\/odrzana-peta-regionalna-konferencija-caring-for-rare-posvecena-unapredjenju-polozaja-osoba-sa-retkim-bolestima\/\" \/>\n<meta property=\"og:site_name\" content=\"Poverenik za za\u0161titu ravnopravnosti\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/poverenikzazastituravnopravnosti\/\" \/>\n<meta property=\"article:published_time\" content=\"2024-09-12T14:57:50+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-09-12T14:58:44+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/ravnopravnost.gov.rs\/wp-content\/uploads\/2024\/09\/nasl0108d9f7-V.png\" \/>\n\t<meta property=\"og:image:width\" content=\"800\" \/>\n\t<meta property=\"og:image:height\" content=\"488\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Milorad Babovi\u0107\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@ravnopravnostRS\" \/>\n<meta name=\"twitter:site\" content=\"@ravnopravnostRS\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Milorad Babovi\u0107\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/ravnopravnost.gov.rs\\\/rs\\\/odrzana-peta-regionalna-konferencija-caring-for-rare-posvecena-unapredjenju-polozaja-osoba-sa-retkim-bolestima\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/ravnopravnost.gov.rs\\\/rs\\\/odrzana-peta-regionalna-konferencija-caring-for-rare-posvecena-unapredjenju-polozaja-osoba-sa-retkim-bolestima\\\/\"},\"author\":{\"name\":\"Milorad Babovi\u0107\",\"@id\":\"https:\\\/\\\/ravnopravnost.gov.rs\\\/rs\\\/#\\\/schema\\\/person\\\/9c3742043beed272c6b35b4333ddbec8\"},\"headline\":\"Odr\u017eana peta regionalna konferencija &#8220;Caring for Rare&#8221; 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