{"id":12541,"date":"2024-09-24T09:09:59","date_gmt":"2024-09-24T07:09:59","guid":{"rendered":"https:\/\/semmelweis.hu\/borklinika\/?p=12541"},"modified":"2024-09-24T09:11:18","modified_gmt":"2024-09-24T07:11:18","slug":"szeptember-30-an-zarul-az-epidermolysis-bullosa-betegseg-valodi-terheit-vizsgalo-felmeres","status":"publish","type":"post","link":"https:\/\/semmelweis.hu\/borklinika\/2024\/09\/24\/szeptember-30-an-zarul-az-epidermolysis-bullosa-betegseg-valodi-terheit-vizsgalo-felmeres\/","title":{"rendered":"Szeptember 30-\u00e1n z\u00e1rul az Epidermolysis Bullosa betegs\u00e9g val\u00f3di terheit vizsg\u00e1l\u00f3 felm\u00e9r\u00e9s"},"content":{"rendered":"<p style=\"text-align: justify\">Ne hagyja ki a lehet\u0151s\u00e9get, hogy elmondja az Epidermolysis Bullos\u00e1val (EB-vel) val\u00f3 egy\u00fctt\u00e9l\u00e9s terheit.<\/p>\n<p style=\"text-align: justify\">BUR-EB inform\u00e1ci\u00f3kat gy\u0171jt az \u00d6n \u00e1ltal felhaszn\u00e1lt er\u0151forr\u00e1sokr\u00f3l \u00e9s vizsg\u00e1lja, hogyan befoly\u00e1solja az EB az \u00d6n, illetve a gondoz\u00e1sban seg\u00edts\u00e9get ny\u00fajt\u00f3 hozz\u00e1tartoz\u00f3k \u00e9let\u00e9t, ezzel is hozz\u00e1j\u00e1rulva az EB-vel \u00e9l\u0151k ell\u00e1t\u00e1s\u00e1nak jav\u00edt\u00e1s\u00e1hoz.<\/p>\n<p style=\"text-align: justify\">T\u00f6ltse ki a k\u00e9rd\u0151\u00edvet, hogy seg\u00edtsen azonos\u00edtani az EB gondoz\u00f3k legnagyobb neh\u00e9zs\u00e9geit, valamint a betegs\u00e9g p\u00e9nz\u00fcgyi \u00e9s \u00e9letmin\u0151s\u00e9gre gyakorolt hat\u00e1s\u00e1t, illetve az eg\u00e9szs\u00e9g\u00fcgyi ell\u00e1t\u00e1shoz val\u00f3 hozz\u00e1f\u00e9r\u00e9ssel kapcsolatos el\u00e9gedetts\u00e9g\u00e9t Magyarorsz\u00e1gon.<\/p>\n<ul>\n<li>Feln\u0151tteknek (18+) \u00e9s gondoz\u00f3iknak: <a href=\"https:\/\/survey.saosl.com\/index.php\/382685?lang=hu\">https:\/\/survey.saosl.com\/index.php\/382685?lang=hu<\/a><\/li>\n<li>Gyermekek (0-17 \u00e9ves korig) \u00e9s gondoz\u00f3ik sz\u00e1m\u00e1ra: <a href=\"https:\/\/survey.saosl.com\/index.php\/513356?lang=hu\">https:\/\/survey.saosl.com\/index.php\/513356?lang=hu<\/a><\/li>\n<\/ul>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12542 aligncenter\" src=\"https:\/\/semmelweis.hu\/borklinika\/files\/2024\/09\/BUR-EB-plakat.jpg\" alt=\"\" width=\"929\" height=\"773\" srcset=\"https:\/\/semmelweis.hu\/borklinika\/files\/2024\/09\/BUR-EB-plakat.jpg 929w, https:\/\/semmelweis.hu\/borklinika\/files\/2024\/09\/BUR-EB-plakat-400x333.jpg 400w, https:\/\/semmelweis.hu\/borklinika\/files\/2024\/09\/BUR-EB-plakat-768x639.jpg 768w, https:\/\/semmelweis.hu\/borklinika\/files\/2024\/09\/BUR-EB-plakat-753x627.jpg 753w\" sizes=\"auto, (max-width: 929px) 100vw, 929px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Ne hagyja ki a lehet\u0151s\u00e9get, hogy elmondja az Epidermolysis Bullos\u00e1val (EB-vel) val\u00f3 egy\u00fctt\u00e9l\u00e9s terheit. BUR-EB inform\u00e1ci\u00f3kat gy\u0171jt az \u00d6n \u00e1ltal felhaszn\u00e1lt er\u0151forr\u00e1sokr\u00f3l \u00e9s vizsg\u00e1lja, hogyan befoly\u00e1solja az EB az \u00d6n, illetve a gondoz\u00e1sban seg\u00edts\u00e9get ny\u00fajt\u00f3 hozz\u00e1tartoz\u00f3k \u00e9let\u00e9t, ezzel is hozz\u00e1j\u00e1rulva az EB-vel \u00e9l\u0151k ell\u00e1t\u00e1s\u00e1nak jav\u00edt\u00e1s\u00e1hoz. T\u00f6ltse ki a k\u00e9rd\u0151\u00edvet, hogy seg\u00edtsen azonos\u00edtani az EB gondoz\u00f3k &hellip;<\/p>\n","protected":false},"author":101244,"featured_media":12542,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[69],"tags":[],"class_list":["post-12541","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\/12541","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=12541"}],"version-history":[{"count":6,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/posts\/12541\/revisions"}],"predecessor-version":[{"id":12548,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/posts\/12541\/revisions\/12548"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/media\/12542"}],"wp:attachment":[{"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/media?parent=12541"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/categories?post=12541"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/semmelweis.hu\/borklinika\/wp-json\/wp\/v2\/tags?post=12541"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}