{"id":64690,"date":"2026-02-09T17:40:45","date_gmt":"2026-02-09T16:40:45","guid":{"rendered":"https:\/\/ravnopravnost.gov.rs\/?p=64690"},"modified":"2026-02-09T17:42:36","modified_gmt":"2026-02-09T16:42:36","slug":"okrugli-sto-retke-bolesti-ali-ne-i-retka-prava-u-organizaciji-udruzenja-hrabrisa-lil-brave-one-u-novom-sadu","status":"publish","type":"post","link":"https:\/\/ravnopravnost.gov.rs\/rs\/okrugli-sto-retke-bolesti-ali-ne-i-retka-prava-u-organizaciji-udruzenja-hrabrisa-lil-brave-one-u-novom-sadu\/","title":{"rendered":"Okrugli sto \u201eRetke bolesti, ali ne i retka prava\u201c, u organizaciji udru\u017eenja Hrabri\u0161a \u2013 Lil\u2019 Brave One u Novom Sadu"},"content":{"rendered":"

Pomo\u0107nice \u00a0Poverenika za za\u0161titu ravnopravnosti Mirjana Kecman I Tatjana Priji\u0107 su u\u010destvovale na okruglom stolu koji je odr\u017ean u Novom Sadu – \u201eRetke bolesti, ali ne i retka prava\u201c<\/strong>, u organizaciji udru\u017eenja Hrabri\u0161a \u2013 Lil\u2019 Brave One<\/strong>, u okviru istoimene kampanje javnog zagovaranja usmerene na unapre\u0111enje ostvarivanja prava iz sistema socijalne za\u0161tite.<\/p>\n

Okruglom stolu su pored nadle\u017enih institucija prisustvovali roditelji dece sa retkim bolestima, predstavnici organizacija civilnog dru\u0161tva, kao i zainteresovani gra\u0111ani, koji su aktivno u\u010destvovali u diskusiji i postavljali pitanja u vezi sa procedurama i prakti\u010dnim iskustvima u ostvarivanju prava iz oblasti socijalne za\u0161tite.<\/p>\n

Tokom okruglog stola ukazano je na naj\u010de\u0161\u0107e problem u primeni va\u017ee\u0107ih propisa, neujedna\u010denoj praksi, kao i o potrebi za boljim informisanjem porodica dece sa retkim bolestima o pravima koja im pripadaju. U\u010desnici su istakli da je ostvarivanje prava na dodatak za pomo\u0107 i negu drugog lica jedno od najva\u017enijih \u00a0prava iz sistema socijalne za\u0161tite. Ovo materijalno davanje je posebno zna\u010dajno s obzirom na pove\u0107ane tro\u0161kove koje briga I nega podrazumevaju. Pored toga ostvarivanje ovog prava ne predstavlja samo finansijsku podr\u0161ku, ve\u0107 doprinosi ose\u0107aju sigurnosti, stabilnosti i socijalnoj uklju\u010denosti obolelih od retkih bolesti. Istaknut je i zna\u010daj obra\u0107anja instituciji Poverenika jer su konkretna iskustva, li\u010dne pri\u010de roditelja klju\u010dne kako bi mere i inicijative Poverenika bile efikasne, kao \u0161to je to bio slu\u010daj sa preporukama mera ovog organa svim pred\u0161kolskim ustanovama u vezi prioritetnog upisa I uz obezbe\u0111ivanje primene \u017eivotne terapije tokom boravka dece sa retkom\/neurotransmiterskom\/hroni\u010dnom nezaraznom bole\u0161\u0107u u vrti\u0107ima.<\/p>\n

Iz udru\u017eenja Hrabri\u0161a poru\u010deno je da \u0107e zaklju\u010dci sa okruglog stola biti kori\u0161\u0107eni kao osnova za dalje aktivnosti u okviru kampanje \u201e<\/em><\/strong>Retke bolesti, ali ne i retka prava<\/em>\u201c, sa ciljem unapre\u0111enja prakse i ja\u010danja sistemske podr\u0161ke porodicama koje \u017eive sa retkim bolestima, a sa institucijom Poverenika je dogovorena dalja saradnja i podr\u0161ka ovog organa na realizaciji ovih aktivnosti.<\/p>\n

Okrugli sto je moderirala Ivana Badnjarevi\u0107, predsednica udru\u017eenja Hrabri\u0161a, a kao govornice su se obratile Milana Mitrovi\u0107 Kova\u010devi\u0107, \u010dlanica pravnog tima udru\u017eenja Hrabri\u0161a,Vanja Kova\u010devi\u0107, \u010dlanica pravnog tima udru\u017eenja Hrabri\u0161a, Natalija Borkov, sekretarka Centra za socijalni rad Grada Novog Sada i Mirjana Kecman, pomo\u0107nica Poverenika za za\u0161titu ravnopravnosti.<\/p>\n\n ","protected":false},"excerpt":{"rendered":"

Pomo\u0107nice \u00a0Poverenika za za\u0161titu ravnopravnosti Mirjana Kecman I Tatjana Priji\u0107 su u\u010destvovale na okruglom stolu koji je odr\u017ean u Novom Sadu – \u201eRetke bolesti, ali ne i retka prava\u201c, u organizaciji udru\u017eenja Hrabri\u0161a \u2013 Lil\u2019 Brave One, u okviru istoimene kampanje javnog zagovaranja usmerene na unapre\u0111enje ostvarivanja prava iz sistema socijalne za\u0161tite. Okruglom stolu su…<\/p>\n","protected":false},"author":17,"featured_media":64688,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[95],"tags":[],"class_list":["post-64690","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-vesti-lat"],"yoast_head":"\nOkrugli sto \u201eRetke bolesti, ali ne i retka prava\u201c, u organizaciji udru\u017eenja Hrabri\u0161a \u2013 Lil\u2019 Brave One u Novom Sadu • 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\/okrugli-sto-retke-bolesti-ali-ne-i-retka-prava-u-organizaciji-udruzenja-hrabrisa-lil-brave-one-u-novom-sadu\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Okrugli sto \u201eRetke bolesti, ali ne i retka prava\u201c, u organizaciji udru\u017eenja Hrabri\u0161a \u2013 Lil\u2019 Brave One u Novom Sadu • Poverenik za za\u0161titu ravnopravnosti\" \/>\n<meta property=\"og:description\" content=\"Pomo\u0107nice \u00a0Poverenika za za\u0161titu ravnopravnosti Mirjana Kecman I Tatjana Priji\u0107 su u\u010destvovale na okruglom stolu koji je odr\u017ean u Novom Sadu – \u201eRetke bolesti, ali ne i retka prava\u201c, u organizaciji udru\u017eenja Hrabri\u0161a \u2013 Lil\u2019 Brave One, u okviru istoimene kampanje javnog zagovaranja usmerene na unapre\u0111enje ostvarivanja prava iz sistema socijalne za\u0161tite. 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