{"id":351,"date":"2014-05-14T09:19:00","date_gmt":"2014-05-14T07:19:00","guid":{"rendered":"http:\/\/semmelweis.hu\/borklinika\/?page_id=351"},"modified":"2024-10-09T10:10:35","modified_gmt":"2024-10-09T08:10:35","slug":"debra-hungary","status":"publish","type":"page","link":"https:\/\/semmelweis.hu\/borklinika\/a-betegellatas-fo-profiljai\/debra-hungary\/","title":{"rendered":"dEBra Hungary"},"content":{"rendered":"<p><a href=\"https:\/\/semmelweis.hu\/borklinika\/files\/2014\/05\/debra.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-353 alignright\" src=\"https:\/\/semmelweis.hu\/borklinika\/files\/2014\/05\/debra.jpg\" alt=\"debra\" width=\"372\" height=\"135\" srcset=\"https:\/\/semmelweis.hu\/borklinika\/files\/2014\/05\/debra.jpg 372w, https:\/\/semmelweis.hu\/borklinika\/files\/2014\/05\/debra-300x108.jpg 300w\" sizes=\"auto, (max-width: 372px) 100vw, 372px\" \/><\/a>\u00a0<strong>dEBra &#8211; (Dystrophic Epidermolysis Bullosa Research Association) egy nemzetk\u00f6zi j\u00f3t\u00e9konys\u00e1gi szervezet.<\/strong><\/p>\n<p>&nbsp;<\/p>\n<p style=\"text-align: justify\">Olyan emberek megseg\u00edt\u00e9s\u00e9re j\u00f6tt l\u00e9tre, akik egy ritka, \u00f6r\u00f6kletes b\u0151rbetegs\u00e9gben szenvednek, melynek neve epidermolysis bullosa, r\u00f6viden EB.<\/p>\n<p style=\"text-align: justify\" align=\"justify\"><strong>dEBra Hungary<\/strong><\/p>\n<p style=\"text-align: justify\" align=\"justify\">Magyarorsz\u00e1gon az Epidermolysis Bullosa Alap\u00edtv\u00e1ny csatlakozott ehhez a szervezethez \u00e9s legf\u0151bb feladat\u00e1nak tartja a ma m\u00e9g gy\u00f3gy\u00edthatatlan b\u0151rbetegs\u00e9g \u00e9rintettjeinek gondoz\u00e1s\u00e1t.<br \/>\nAz Epidermolysis Bullosa Alap\u00edtv\u00e1ny (nemzetk\u00f6zileg haszn\u00e1lt nev\u00e9n DebRA Magyarorsz\u00e1g &#8211; DebRA Hungary) 1997-ben alakult. K\u00e9t f\u0151 tev\u00e9kenys\u00e9gi ir\u00e1nyzata:<\/p>\n<div align=\"justify\">\n<ul>\n<li>az EB betegs\u00e9gben szenved\u0151k speci\u00e1lis eg\u00e9szs\u00e9g\u00fcgyi ell\u00e1t\u00e1s\u00e1nak megszervez\u00e9se<\/li>\n<li>a betegs\u00e9g h\u00e1tter\u00e9t ad\u00f3 genetikai defektusok kimutat\u00e1s\u00e1ra ir\u00e1nyul\u00f3 kutat\u00f3munk\u00e1k v\u00e9gz\u00e9se.<\/li>\n<\/ul>\n<\/div>\n<div>A DebRA Hungary 2015. december\u00e9t\u0151l, az \u00e9rintett betegek csal\u00e1dtagjai \u00e1ltal alap\u00edtott bar\u00e1ti t\u00e1rsas\u00e1g keretei k\u00f6z\u00f6tt folytatja tev\u00e9kenys\u00e9g\u00e9t. Szoros kapcsolatot fenntartva a Semmelweis B\u0151rklinik\u00e1val. Az \u00f6nk\u00e9ntesekb\u0151l \u00e1ll\u00f3 t\u00e1rsas\u00e1g, az EB elnevez\u00e9s\u0171 b\u0151rbetegs\u00e9ggel kapcsolatos ismeretterjeszt\u00e9st v\u00e9gez, seg\u00edti megszervezni a betegek szakszer\u0171 ell\u00e1t\u00e1s\u00e1t, \u00e9s a rendelkez\u00e9sre \u00e1ll\u00f3 eszk\u00f6z\u00f6kkel \u2013 k\u00fcl\u00f6n\u00f6sen a szakter\u00fcleten tudom\u00e1nyos kutat\u00e1si eredm\u00e9nyeket el\u00e9rt orvosok tapasztalatainak felhaszn\u00e1l\u00e1s\u00e1val \u2013 az EB betegs\u00e9gben szenved\u0151k \u00e9s hozz\u00e1tartoz\u00f3ik r\u00e9sz\u00e9re seg\u00edts\u00e9get ny\u00fajt.<\/div>\n<div>\u00a0<\/div>\n<div>\n<div>Tov\u00e1bbi inform\u00e1ci\u00f3: <a href=\"https:\/\/bullosa.blog.hu\/\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/bullosa.blog.hu\/<\/a><\/div>\n<div>\u00a0<\/div>\n<div>El\u00e9rhet\u0151s\u00e9g:<\/div>\n<div><a href=\"https:\/\/www.facebook.com\/epidermolysis.bullosa.5\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.facebook.com\/epidermolysis.bullosa.5<\/a><\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p><a href=\"https:\/\/semmelweis.hu\/borklinika\/files\/2014\/05\/debra.jpg\"><\/a> \u00a0dEBra &#8211; (Dystrophic Epidermolysis Bullosa Research Association) egy nemzetk\u00f6zi j\u00f3t\u00e9konys\u00e1gi szervezet. &nbsp; Olyan emberek megseg\u00edt\u00e9s\u00e9re j\u00f6tt l\u00e9tre, akik egy ritka, \u00f6r\u00f6kletes b\u0151rbetegs\u00e9gben szenvednek, melynek neve epidermolysis bullosa, r\u00f6viden EB. dEBra Hungary Magyarorsz\u00e1gon az Epidermolysis Bullosa Alap\u00edtv\u00e1ny csatlakozott ehhez a szervezethez \u00e9s legf\u0151bb feladat\u00e1nak tartja a ma m\u00e9g gy\u00f3gy\u00edthatatlan b\u0151rbetegs\u00e9g \u00e9rintettjeinek gondoz\u00e1s\u00e1t. Az Epidermolysis Bullosa Alap\u00edtv\u00e1ny &hellip;<\/p>\n","protected":false},"author":101242,"featured_media":0,"parent":9,"menu_order":8,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"categories":[],"tags":[],"class_list":["post-351","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/pages\/351","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/users\/101242"}],"replies":[{"embeddable":true,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/comments?post=351"}],"version-history":[{"count":10,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/pages\/351\/revisions"}],"predecessor-version":[{"id":12601,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/pages\/351\/revisions\/12601"}],"up":[{"embeddable":true,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/pages\/9"}],"wp:attachment":[{"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/media?parent=351"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/categories?post=351"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/tags?post=351"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}