{"id":23249,"date":"2022-08-12T02:51:03","date_gmt":"2022-08-12T02:51:03","guid":{"rendered":"https:\/\/haberulus.net\/?p=23249"},"modified":"2022-08-12T02:51:03","modified_gmt":"2022-08-12T02:51:03","slug":"nadir-cocuklarin-farkinda-misiniz","status":"publish","type":"post","link":"https:\/\/haberulus.net\/?p=23249","title":{"rendered":"Nadir \u00e7ocuklar\u0131n fark\u0131nda m\u0131s\u0131n\u0131z?"},"content":{"rendered":"

Nadir-X adl\u0131 \u00e7izgi roman projesi, nadir hastal\u0131\u011f\u0131 olan ve \u00f6zellikle akranlar\u0131 taraf\u0131ndan d\u0131\u015flanan \u00e7ocuklar\u0131 topluma do\u011fru \u015fekilde anlatmaya devam ediyor. Kitab\u0131n, geliriyle de nadir hastal\u0131klarla m\u00fccadele eden derneklere destek sa\u011flan\u0131yor.<\/b><\/p>\n

T\u00fcrkiye’de 6 milyondan fazla ki\u015fi ve yak\u0131n\u0131 nadir hastal\u0131klarla m\u00fccadele ediyor. Cildi ve sa\u00e7\u0131 beyazlatan albinizmden, kemiklerin cam gibi k\u0131r\u0131lmas\u0131na yol a\u00e7an cam kemik hastal\u0131\u011f\u0131na kadar binlerce \u00e7e\u015fidi bulunan nadir hastal\u0131klarla sava\u015fan \u00e7ocuklar\u0131n ve ailelerin sava\u015ft\u0131\u011f\u0131 ba\u015fka bir konu ise toplumdaki yanl\u0131\u015f bilgiler ve akran zorbal\u0131\u011f\u0131 sorunu\u2026 \u201cNadir-X\u201d Projesi; nadir hastal\u0131klarla m\u00fccadele eden \u00e7ocuklar\u0131 kamuoyuna daha do\u011fru bir \u015fekilde anlatmak, onlar\u0131n bu m\u00fccadelede yaln\u0131z olmad\u0131klar\u0131n\u0131 hissettirmek ve sosyal \u00e7evrelerinden kopmamalar\u0131n\u0131 sa\u011flamak amac\u0131yla olu\u015fturulmu\u015f bir \u00e7izgi roman projesi\u2026<\/p>\n

\"\"<\/p>\n

M\u0130N\u0130KLERE B\u00dcY\u00dcK DESTEK<\/strong><\/p>\n

Nadir-X’in ilk yay\u0131nlanan \u00e7izgi roman\u0131, nadir hastal\u0131klara sahip \u00e7ocuklar\u0131n g\u00fcnl\u00fck hayatlar\u0131nda ya\u015fad\u0131klar\u0131 sorunlara dikkat \u00e7ekmek, okul d\u00f6nemindeki \u00e7ocuklar\u0131n tedavilerini s\u00fcrd\u00fcrmelerine yard\u0131m etmek, ya\u015f\u0131tlar\u0131 taraf\u0131ndan okulda d\u0131\u015flanmalar\u0131n\u0131 engellemek ve \u00e7ocuklar\u0131n tedavi s\u00fcre\u00e7lerinin arkada\u015flar\u0131 taraf\u0131ndan desteklenmesini sa\u011flamak amac\u0131yla yay\u0131nlanm\u0131\u015ft\u0131.<\/p>\n

\"\"<\/p>\n

3 HASTALIK, 3 H\u0130KAYE<\/strong><\/p>\n

SMA Hastal\u0131\u011f\u0131 ile M\u00fccadele Derne\u011fi (SMA-DER), Mukopolisakkaridoz ve Benzeri Lizozomal Depo Hastal\u0131klar\u0131 Derne\u011fi (MPS LH) ve T\u00fcrk \u00c7ocuk Gastroenteroloji Hepatoloji ve Beslenme Derne\u011fi’nin\u00a0 (T\u00c7GHBD) katk\u0131da bulundu\u011fu Nadir-X’in ikinci kitab\u0131nda da \u00fc\u00e7 farkl\u0131 hastal\u0131k ve bu hastal\u0131klara sahip d\u00f6rt farkl\u0131 karakter yer al\u0131yor. SMA Hastas\u0131; \u201cUzay \u00c7ocuk Ata\u201d, MPS hastas\u0131; \u201cSes \u00c7ocuk Cem\u201d ve Wilson Hastas\u0131; \u201cY\u0131ld\u0131r\u0131m K\u0131zlar \u0130klim ve Melisa\u201dn\u0131n maceralar\u0131n\u0131 konu alan kitaptan elde edilecek gelirin bir k\u0131sm\u0131yla SMA Hastal\u0131\u011f\u0131 ile M\u00fccadele Derne\u011fi (SMA-DER) ile Mukopolisakkaridoz ve Benzeri Lizozomal Depo Hastal\u0131klar\u0131 Derne\u011fi’ne (MPS LH) destek verilecek.<\/p>\n

\u00a0<\/p>\n","protected":false},"excerpt":{"rendered":"

Nadir-X adl\u0131 \u00e7izgi roman projesi, nadir hastal\u0131\u011f\u0131 olan ve \u00f6zellikle akranlar\u0131 taraf\u0131ndan d\u0131\u015flanan \u00e7ocuklar\u0131 topluma do\u011fru \u015fekilde anlatmaya devam …<\/p>\n","protected":false},"author":1,"featured_media":23250,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[27],"tags":[543,181,102,5423,1136],"class_list":["post-23249","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-kultur-sanat","tag-dernegi","tag-hastalik","tag-mucadele","tag-nadir","tag-sma"],"_links":{"self":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts\/23249","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=23249"}],"version-history":[{"count":1,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts\/23249\/revisions"}],"predecessor-version":[{"id":23251,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts\/23249\/revisions\/23251"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/media\/23250"}],"wp:attachment":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=23249"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=23249"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=23249"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}