{"id":12398,"date":"2024-08-08T09:24:50","date_gmt":"2024-08-08T07:24:50","guid":{"rendered":"https:\/\/semmelweis.hu\/borklinika\/?p=12398"},"modified":"2024-08-08T09:24:50","modified_gmt":"2024-08-08T07:24:50","slug":"a-bur-eb-az-epidermolysis-bullosa-eb-valodi-terheinek-eletminoseg-vizsgalata","status":"publish","type":"post","link":"https:\/\/semmelweis.hu\/borklinika\/2024\/08\/08\/a-bur-eb-az-epidermolysis-bullosa-eb-valodi-terheinek-eletminoseg-vizsgalata\/","title":{"rendered":"A BUR-EB az Epidermolysis Bullosa (EB) val\u00f3di terheinek \u00e9letmin\u0151s\u00e9g vizsg\u00e1lata"},"content":{"rendered":"<div class=\"xdj266r x11i5rnm xat24cr x1mh8g0r x1vvkbs x126k92a\">\n<div dir=\"auto\" style=\"text-align: justify\">\u00d6n Magyarorsz\u00e1gon, Ausztri\u00e1ban, Bulg\u00e1ri\u00e1ban, Franciaorsz\u00e1gban, Olaszorsz\u00e1gban vagy Spanyolorsz\u00e1gban \u00e9l?\u00a0<\/div>\n<div dir=\"auto\" style=\"text-align: justify\">BUR-EB az Epidermolysis Bullosa (EB) val\u00f3di terheit szeretn\u00e9 felm\u00e9rni ezekben az eur\u00f3piai orsz\u00e1gokban, t\u00f6bbek k\u00f6z\u00f6tt:<\/div>\n<div dir=\"auto\">\u00a0<\/div>\n<ul>\n<li dir=\"auto\" style=\"text-align: justify\">az \u00d6n \u00e9letmin\u0151s\u00e9g\u00e9t<\/li>\n<li dir=\"auto\" style=\"text-align: justify\">az \u00d6n hozz\u00e1f\u00e9r\u00e9s\u00e9t a szoci\u00e1lis \u00e9s eg\u00e9szs\u00e9g\u00fcgyi szolg\u00e1ltat\u00e1sokhoz \u00e9s az el\u00e9gedetts\u00e9g\u00e9t<\/li>\n<li dir=\"auto\" style=\"text-align: justify\">az eg\u00e9szs\u00e9g\u00fcgyi ell\u00e1t\u00e1s \u00e9s az inform\u00e1lis gondoz\u00e1s k\u00f6lts\u00e9geit<\/li>\n<li dir=\"auto\" style=\"text-align: justify\">az \u00d6n csal\u00e1dja p\u00e9nz\u00fcgyi h\u00e1tter\u00e9t<\/li>\n<\/ul>\n<\/div>\n<div class=\"x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a\" style=\"text-align: justify\">\n<div dir=\"auto\">A BUR-EB inform\u00e1ci\u00f3kat gy\u0171jt az er\u0151forr\u00e1sokr\u00f3l \u00e9s arr\u00f3l, hogy a betegs\u00e9g hogyan befoly\u00e1solja az \u00d6n \u00e9let\u00e9t, valamint a gondoz\u00f3k terheit, ezzel is hozz\u00e1j\u00e1rulva az EB betegs\u00e9gben szenved\u0151k ell\u00e1t\u00e1s\u00e1nak jav\u00edt\u00e1s\u00e1hoz.<\/div>\n<div dir=\"auto\">\u00a0<\/div>\n<div dir=\"auto\"><strong>K\u00e9rj\u00fck ossza meg &#8211; min\u00e9l t\u00f6bb r\u00e9sztvev\u0151re van sz\u00fcks\u00e9g\u00fcnk!<\/strong><\/div>\n<div dir=\"auto\"><strong>T\u00f6ltse ki anonim k\u00e9rd\u0151\u00edv\u00fcnket 2024 augusztus v\u00e9g\u00e9ig! <\/strong><\/div>\n<div dir=\"auto\">\u00a0<\/div>\n<div dir=\"auto\"><span style=\"font-size: 1rem\">Feln\u0151ttek sz\u00e1m\u00e1ra t\u00f6ltse ki <\/span><a href=\"https:\/\/survey.saosl.com\/index.php\/382685?lang=hu\" target=\"_blank\" rel=\"noopener\"><span style=\"font-size: 18pt\"><strong>ezt<\/strong> <\/span><\/a><span style=\"font-size: 1rem\">a k\u00e9rd\u0151\u00edvet.<\/span><\/div>\n<\/div>\n<div class=\"x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a\" style=\"text-align: justify\">\n<div dir=\"auto\"><span style=\"font-size: 1rem\">Gyermekek \u00e9s gondoz\u00f3ik sz\u00e1m\u00e1ra t\u00f6ltse ki <span style=\"font-size: 18pt\"><a href=\"https:\/\/survey.saosl.com\/index.php\/513356?lang=hu #epidermolysisbullosa #EBkutat\u00e1s #BUREB\" target=\"_blank\" rel=\"noopener\"><strong>ezt<\/strong><\/a><\/span> a k\u00e9rd\u0151\u00edvet.<\/span><\/div>\n<div dir=\"auto\">\u00a0<\/div>\n<div dir=\"auto\"><span style=\"font-size: 1rem\"><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12399 aligncenter\" src=\"https:\/\/semmelweis.hu\/borklinika\/files\/2024\/08\/EB4.jpg\" alt=\"\" width=\"1080\" height=\"1080\" srcset=\"https:\/\/semmelweis.hu\/borklinika\/files\/2024\/08\/EB4.jpg 1080w, https:\/\/semmelweis.hu\/borklinika\/files\/2024\/08\/EB4-400x400.jpg 400w, https:\/\/semmelweis.hu\/borklinika\/files\/2024\/08\/EB4-1024x1024.jpg 1024w, https:\/\/semmelweis.hu\/borklinika\/files\/2024\/08\/EB4-150x150.jpg 150w, https:\/\/semmelweis.hu\/borklinika\/files\/2024\/08\/EB4-768x768.jpg 768w, https:\/\/semmelweis.hu\/borklinika\/files\/2024\/08\/EB4-753x753.jpg 753w\" sizes=\"auto, (max-width: 1080px) 100vw, 1080px\" \/><\/span><\/div>\n<\/div>\n<div class=\"x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a\">\n<div dir=\"auto\" style=\"text-align: justify\">\u00a0<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>\u00d6n Magyarorsz\u00e1gon, Ausztri\u00e1ban, Bulg\u00e1ri\u00e1ban, Franciaorsz\u00e1gban, Olaszorsz\u00e1gban vagy Spanyolorsz\u00e1gban \u00e9l?\u00a0 BUR-EB az Epidermolysis Bullosa (EB) val\u00f3di terheit szeretn\u00e9 felm\u00e9rni ezekben az eur\u00f3piai orsz\u00e1gokban, t\u00f6bbek k\u00f6z\u00f6tt: \u00a0 az \u00d6n \u00e9letmin\u0151s\u00e9g\u00e9t az \u00d6n hozz\u00e1f\u00e9r\u00e9s\u00e9t a szoci\u00e1lis \u00e9s eg\u00e9szs\u00e9g\u00fcgyi szolg\u00e1ltat\u00e1sokhoz \u00e9s az el\u00e9gedetts\u00e9g\u00e9t az eg\u00e9szs\u00e9g\u00fcgyi ell\u00e1t\u00e1s \u00e9s az inform\u00e1lis gondoz\u00e1s k\u00f6lts\u00e9geit az \u00d6n csal\u00e1dja p\u00e9nz\u00fcgyi h\u00e1tter\u00e9t A BUR-EB inform\u00e1ci\u00f3kat &hellip;<\/p>\n","protected":false},"author":101244,"featured_media":12399,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[69],"tags":[],"class_list":["post-12398","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-hirek-hu"],"acf":[],"_links":{"self":[{"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/posts\/12398","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/users\/101244"}],"replies":[{"embeddable":true,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/comments?post=12398"}],"version-history":[{"count":11,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/posts\/12398\/revisions"}],"predecessor-version":[{"id":12421,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/posts\/12398\/revisions\/12421"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/media\/12399"}],"wp:attachment":[{"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/media?parent=12398"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/categories?post=12398"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/tags?post=12398"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}