{"id":62691,"date":"2023-01-14T19:27:57","date_gmt":"2023-01-14T18:27:57","guid":{"rendered":"https:\/\/podcast.rs\/?p=62691"},"modified":"2023-01-14T20:40:39","modified_gmt":"2023-01-14T18:40:39","slug":"rare-and-share-ep09-kako-je-dijagnoza-retke-bolesti-probudila-hrabrost-u-nama-ivana-badnjarevic","status":"publish","type":"post","link":"https:\/\/podcast.rs\/en\/rare-and-share-ep09-kako-je-dijagnoza-retke-bolesti-probudila-hrabrost-u-nama-ivana-badnjarevic\/","title":{"rendered":"Rare and Share EP09 | Kako je dijagnoza retke bolesti probudila hrabrost u nama? Ivana Badnjarevi\u0107"},"content":{"rendered":"

Ivana Badnjarevi\u0107<\/strong> je prve mesece maj\u010dinstva provela u dilemi, strahu i tremi od toga \u0161ta se de\u0161ava sa njenom \u0107erkom Anom. Nakon dijagnosti\u010dke odiseje koja je trajala nekoliko meseci i ponudila odgovor na Klinici u Hajdelbergu (Nema\u010dka) da Ana ima retku neurotransmitersku bolest: deficit tirozin hidroksilaze, po\u010deo je put ka le\u010denju. Sve ovo je rezultiralo osnivanjem Udru\u017eenja gra\u0111ana „Hrabri\u0161a – Lil Brave One“<\/strong> 2016. godine. <\/p>\n

Vi\u0161e detalja o Udru\u017eenju „Hrabri\u0161a – Lil Brave One“, mo\u017eete prona\u0107i na njihovoj internet stranici: www.hrabrisa.rs<\/a> <\/p>\n

U toku ove epizode, razgovarale smo i o: <\/p>\n

– ulozi Udru\u017eenja „Hrabri\u0161a – Lil Brave One“ u organizaciji konferencije „Rare neurotransmitter diseases: from novel research to focused treatments through iNTD network strengthening and patient empowerment“<\/strong> koja je krajem 2022. godine odr\u017eana u Beogradu, <\/p>\n

– o zna\u010daju me\u0111unarodne mre\u017ee za neurotransmiterske bolesti (iNTD): https:\/\/rntd-r2t.com\/<\/a> <\/a> <\/p>\n

– kampanji javnog zagovaranja kroz projekat „Unapre\u0111enje mehanizma zdravstvene za\u0161tite dece sa retkim neurotransmiterskim bolestima, pote\u0161ko\u0107ama u razvoju i hroni\u010dnim oboljenjima“<\/strong> koje je podr\u017eao projekat Vlade \u0160vajcarske „Zajedno za aktivno gra\u0111ansko dru\u0161tvo“<\/strong><\/p>\n

IZJAVA: <\/strong>Na\u0161a je odluka da se sajt kao ni bilo koji kanal komunikacije ne koristi za prikupljanje nov\u010dane pomo\u0107i za pojedina\u010dne slu\u010dajeve le\u010denja. ODRICANJE ODGOVORNOSTI:<\/strong> Sadr\u017eaj podkasta je isklji\u010divo informativnog karaktera i ne predstavlja nikakav medicinski savet. Za medicinske savete, dijagnoze ili terapije obratite se lekaru. <\/p>\n

– Prijavite se na na\u0161 YouTube kanal: @rareandsharepodcast4343 <\/p>\n

Posetite sajt, jer tamo osim epizoda mo\u017eete prona\u0107i transkripte svih razgovora: www.rareandshare.net<\/a> <\/p>\n

– Mo\u017eete videti vi\u0161e objava na na\u0161im profilima dru\u0161tvenih mre\u017ea: <\/p>\n

\ud83d\udd30 Facebook stranica: www.facebook.com\/rareandshare<\/a> <\/p>\n

\ud83d\udd30 Linkedin stranica: https:\/\/www.linkedin.com\/company\/rare<\/a>..<\/a>. <\/p>\n

\ud83d\udd30 Instagram profil: www.instagram.com\/rareandshare<\/a> <\/p>\n

– Kreativnu i tehni\u010dku podr\u0161ku snimanju i emitovanju svih epizoda podcasta „Rare and Share“ pru\u017ea „Retro Digital Agency“, <\/strong>a sajt je: www.retrodigital.agency<\/a><\/p>","protected":false},"excerpt":{"rendered":"

Ivana Badnjarevi\u0107 je prve mesece maj\u010dinstva provela u dilemi, strahu i tremi od toga \u0161ta se de\u0161ava sa njenom \u0107erkom Anom. Nakon dijagnosti\u010dke odiseje koja je trajala nekoliko meseci i ponudila odgovor na Klinici u Hajdelbergu (Nema\u010dka) da Ana ima retku neurotransmitersku bolest: deficit tirozin hidroksilaze, po\u010deo je put ka le\u010denju. Sve ovo je rezultiralo…<\/p>","protected":false},"author":3,"featured_media":58414,"comment_status":"close","ping_status":"closed","sticky":false,"template":"","format":"audio","meta":{"footnotes":""},"categories":[457],"tags":[],"class_list":["post-62691","post","type-post","status-publish","format-audio","has-post-thumbnail","hentry","category-rare-and-share","post_format-post-format-audio"],"_links":{"self":[{"href":"https:\/\/podcast.rs\/en\/wp-json\/wp\/v2\/posts\/62691","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/podcast.rs\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/podcast.rs\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/podcast.rs\/en\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/podcast.rs\/en\/wp-json\/wp\/v2\/comments?post=62691"}],"version-history":[{"count":1,"href":"https:\/\/podcast.rs\/en\/wp-json\/wp\/v2\/posts\/62691\/revisions"}],"predecessor-version":[{"id":62692,"href":"https:\/\/podcast.rs\/en\/wp-json\/wp\/v2\/posts\/62691\/revisions\/62692"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/podcast.rs\/en\/wp-json\/wp\/v2\/media\/58414"}],"wp:attachment":[{"href":"https:\/\/podcast.rs\/en\/wp-json\/wp\/v2\/media?parent=62691"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/podcast.rs\/en\/wp-json\/wp\/v2\/categories?post=62691"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/podcast.rs\/en\/wp-json\/wp\/v2\/tags?post=62691"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}