{"id":24719,"date":"2016-02-26T12:34:03","date_gmt":"2016-02-26T11:34:03","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=24719"},"modified":"2016-02-26T12:34:03","modified_gmt":"2016-02-26T11:34:03","slug":"at-je-hlas-vzacnych-onemocneni-lepe-slyset-2","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=24719","title":{"rendered":"A\u0165 je hlas vz\u00e1cn\u00fdch onemocn\u011bn\u00ed l\u00e9pe sly\u0161et"},"content":{"rendered":"<p><strong>je n\u00e1zev p\u0159\u00e1telsk\u00e9ho setk\u00e1n\u00ed, kter\u00e9 se kon\u00e1 29. \u00fanora 2016 od 15 hodin v Brn\u011b v Mendelov\u011b muzeu Masarykovy univerzity u p\u0159\u00edle\u017eitosti Dne vz\u00e1cn\u00fdch onemocn\u011bn\u00ed.<\/strong><!--more--><\/p>\n<p>Smyslem t\u00e9to akce je uk\u00e1zat \u0161irok\u00e9 ve\u0159ejnosti i t\u011bm, kdo se pod\u00edlej\u00ed na rozhodov\u00e1n\u00ed o ot\u00e1zk\u00e1ch zdravotn\u00ed a soci\u00e1ln\u00ed p\u00e9\u010de, co vz\u00e1cn\u00e1 onemocn\u011bn\u00ed jsou a co znamenaj\u00ed pro \u017eivot pacient\u016f. Vedle diskuse o vz\u00e1cn\u00fdch nemocech zazn\u00ed na setk\u00e1n\u00ed informace o projektu ur\u010den\u00e9ho specificky pro handicapovan\u00e9, seniory a rodiny s chronicky nemocn\u00fdmi v Centru Veronica Host\u011bt\u00edn v B\u00edl\u00fdch Karpatech.<\/p>\n<p>Ofici\u00e1ln\u00ed heslo pro leto\u0161n\u00ed Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed je: P\u0159ipojte se k n\u00e1m, chceme b\u00fdt sly\u0161et!<\/p>\n<p>Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed se kon\u00e1 ka\u017edoro\u010dn\u011b posledn\u00ed \u00fanorov\u00fd den. Tuto akci koordinuje na mezin\u00e1rodn\u00ed \u00farovni EURORDIS (Evropsk\u00e1 organizace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed). V jednotliv\u00fdch zem\u00edch se na n\u00ed pod\u00edlej\u00ed m\u00edstn\u00ed pacientsk\u00e1 sdru\u017een\u00ed i jejich n\u00e1rodn\u00ed asociace, v \u010cR je to \u010cesk\u00e1 asociace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed (\u010cAVO). Prvn\u00ed Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed se konal v roce 2008.<\/p>\n<p>Spr\u00e1vn\u00e1 diagn\u00f3za m\u016f\u017ee lidem se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm zachr\u00e1nit \u017eivot. Existuj\u00ed tis\u00edce m\u00e1lo zn\u00e1m\u00fdch nemoc\u00ed, kter\u00fdmi trp\u00ed jen hrstka pacient\u016f. Pacienti se vz\u00e1cnou nemoc\u00ed nemus\u00ed dost\u00e1vat spr\u00e1vnou l\u00e9\u010dbu, proto\u017ee se jejich l\u00e9ka\u0159 s jejich chorobou nikdy nesetkal. I na to 29. \u00fanora upozor\u0148uje leto\u0161n\u00ed Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed.<\/p>\n<p>Onemocn\u011bn\u00ed je v r\u00e1mci EU definov\u00e1no jako vz\u00e1cn\u00e9, pokud postihuje m\u00e9n\u011b ne\u017e 5 osob z ka\u017ed\u00fdch 10 000 (tj. m\u00e9n\u011b ne\u017e 1 pacienta na 2 000 jedinc\u016f). Vz\u00e1cn\u00e1 onemocn\u011bn\u00ed maj\u00ed obvykle v\u00fdznamn\u00fd dopad na kvalitu \u017eivota a soci\u00e1ln\u00ed za\u010dlen\u011bn\u00ed pacienta, pop\u0159. ohro\u017euj\u00ed jeho \u017eivot.<\/p>\n<p>Pro pacienty s n\u011bkter\u00fdmi vz\u00e1cn\u00fdmi nemocemi vznikaj\u00ed v \u010cR specializovan\u00e1 centra, nap\u0159. centra pro pacienty s cystickou fibr\u00f3zou, nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel, d\u011bdi\u010dn\u00fdmi metabolick\u00fdmi vadami \u010di vz\u00e1cn\u00fdmi onkologick\u00fdmi nemocemi. Ve FN Brno pracuje t\u00fdm odborn\u00edk\u016f v jednom z p\u011bti \u010desk\u00fdch center pro pacienty s cystickou fibr\u00f3zou a o v\u0161echny pacienty s tzv. nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel (epidermolysis bullosa, EB) v \u010cR star\u00e1 t\u00fdm EB Centra FN Brno spole\u010dn\u011b s organizac\u00ed DEBRA \u010cR.<\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>je n\u00e1zev p\u0159\u00e1telsk\u00e9ho setk\u00e1n\u00ed, kter\u00e9 se kon\u00e1 29. \u00fanora 2016 od 15 hodin v Brn\u011b v Mendelov\u011b muzeu Masarykovy univerzity u p\u0159\u00edle\u017eitosti Dne vz\u00e1cn\u00fdch onemocn\u011bn\u00ed.<\/p>\n<\/div>","protected":false},"author":1,"featured_media":18700,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-24719","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spolecnost"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/24719","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=24719"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/24719\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/18700"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=24719"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=24719"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=24719"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}