Koncem \u00fanora byl mezin\u00e1rodn\u00ed den vz\u00e1cn\u00fdch nemoc\u00ed. Upom\u00ednalo na to speci\u00e1ln\u011b osv\u011btlen\u00e9 budov. Vid\u00edme z\u00e1b\u011bry z pra\u017esk\u00e9ho n\u00e1b\u0159e\u017e\u00ed, kde se zbarvil Tan\u010d\u00edc\u00ed d\u016fm. V \u010cesku trp\u00ed n\u011bkterou z t\u011bchto chorob a\u017e p\u016fl milionu lid\u00ed, mnohdy se ale dost\u00e1vaj\u00ed k l\u00e9\u010db\u011b pozd\u011b. Zlep\u0161it by to mohla n\u00e1rodn\u00ed strategie, kterou v b\u0159eznu projedn\u00e1 vl\u00e1da. <\/p>\n\n\n\n
Lea Surovcov\u00e1, redaktorka \u010cT<\/strong> Spin\u00e1ln\u00ed svalovou atrofii Ann\u011b Hlavicov\u00e9 diagnostikovali po narozen\u00ed. Kv\u016fli vrozen\u00e9mu genetick\u00e9mu onemocn\u011bn\u00ed j\u00ed ochabuj\u00ed svaly a d\u00fdch\u00e1 pomoc\u00ed plicn\u00ed ventilace. <\/p>\n\n\n\n Anna Hlavicov\u00e1, pacientka se spin\u00e1ln\u00ed svalovou atrofi\u00ed \u2013 SMA<\/strong> M\u00e1m \u0161t\u011bst\u00ed v ne\u0161t\u011bst\u00ed, \u017ee to moje vz\u00e1cn\u00e9 onemocn\u011bn\u00ed je l\u00e9\u010diteln\u00e9, dok\u00e1\u017ee mi ten \u017eivot s t\u00edm posti\u017een\u00edm n\u011bjak\u00fdm zp\u016fsobem zkvalitnit. <\/p>\n\n\n\n Lea Surovcov\u00e1, redaktorka \u010cT<\/strong> Rok se ale o proplacen\u00ed l\u00e9\u010dby soudila s poji\u0161\u0165ovnou. <\/p>\n\n\n\n Anna Hlavicov\u00e1, pacientka se spin\u00e1ln\u00ed svalovou atrofi\u00ed \u2013 SMA<\/strong> Kdy\u017e o n\u00e1s prost\u011b spole\u010dnost nebude v\u011bd\u011bt, tak se nem\u016f\u017eou ty zm\u011bny jak syst\u00e9mov\u00fd, tak vlastn\u011b individu\u00e1ln\u011b d\u00edt. <\/p>\n\n\n\n Lea Surovcov\u00e1, redaktorka \u010cT<\/strong> Duchennova svalov\u00e1 dystrofie, ALS nebo metabolick\u00e1 onemocn\u011bn\u00ed. V konkr\u00e9tn\u00edch diagn\u00f3z\u00e1ch jde o zlomek p\u0159\u00edpad\u016f. Dohromady ale vz\u00e1cn\u00fdch onemocn\u011bn\u00ed p\u0159es 6000. <\/p>\n\n\n\n Milan Macek, p\u0159ednosta \u00dastavu biologie a l\u00e9ka\u0159sk\u00e9 genetiky<\/strong> Doch\u00e1z\u00ed k velmi rychl\u00e9mu rozvoji genomov\u00fdch technologi\u00ed, kter\u00e9 umo\u017e\u0148uj\u00ed n\u00e1m ty pacienty diagnostikovat, ale sou\u010dasn\u011b tak\u00e9 vlastn\u011b odhaluj\u00ed spoustu variant, kter\u00e9 neum\u00edme interpretovat.<\/p>\n\n\n\n Lea Surovcov\u00e1, redaktorka \u010cT<\/strong> \u010casto jde o detektivn\u00ed p\u0159\u00edpady. Pacienti se k diagn\u00f3ze dost\u00e1vaj\u00ed v pr\u016fm\u011bru a\u017e za p\u011bt let a n\u011bkte\u0159\u00ed nikdy. T\u00edm se zpomaluje cesta k l\u00e9\u010db\u011b i soci\u00e1ln\u00ed pomoci. Ministerstvo zdravotnictv\u00ed p\u0159edstavilo tak\u00e9 fin\u00e1ln\u00ed podobu n\u00e1rodn\u00ed strategie pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed. Zlep\u0161it m\u00e1 dostupnost i koordinaci p\u00e9\u010de. <\/p>\n\n\n\n Adam Vojt\u011bch, ministr zdravotnictv\u00ed \/nestr. za ANO\/<\/strong> Vytv\u00e1\u0159\u00edme pozici p\u0159\u00edmo koordin\u00e1tora, kter\u00fd vlastn\u011b na toto m\u00e1 dohl\u00ed\u017eet. Je to d\u017eungle, je to velmi slo\u017eit\u00e9.<\/p>\n\n\n\n Lea Surovcov\u00e1, redaktorka \u010cT<\/strong> Po\u010d\u00edt\u00e1 s pos\u00edlen\u00edm specializovan\u00fdch center i vznikem n\u00e1rodn\u00edho registru. Kvalita p\u00e9\u010de toti\u017e b\u00fdv\u00e1 v regionech r\u016fzn\u00e1. <\/p>\n\n\n\n Pavla Dole\u017ealov\u00e1, odborn\u00e1 garantka projektu SYPOVO<\/strong> Definov\u00e1n\u00ed center, jejich kompetenc\u00ed a struktury a vz\u00e1jemn\u00fdch vztah\u016f mezi nimi, to si mysl\u00edm, \u017ee je z\u00e1kladem \u00fasp\u011bchu. <\/p>\n\n\n\n Anna Arellanesov\u00e1, p\u0159edsedkyn\u011b \u010desk\u00e9 asociace pro vz\u00e1cn\u00e1 onemocn\u011bni<\/strong> Vzd\u011bl\u00e1v\u00e1n\u00ed nov\u00e9 generace odborn\u00edk\u016f na vz\u00e1cn\u00e1 onemocn\u011bn\u00ed pova\u017eujeme jako velmi d\u016fle\u017eitou sou\u010d\u00e1st n\u00e1rodn\u00ed strategie, proto\u017ee bez nich prost\u011b nebude. <\/p>\n\n\n\n Lea Surovcov\u00e1, redaktorka \u010cT<\/strong> Ta p\u00e9\u010de o propojen\u00ed medic\u00ednsk\u00fdch obor\u016f, speci\u00e1ln\u00ed pedagogiky a soci\u00e1ln\u00ed podpory debatovali tak\u00e9 odborn\u00edci z brn\u011bnsk\u00e9 fakultn\u00ed nemocnice. Do osv\u011bty zapojili i ve\u0159ejnost. <\/p>\n\n\n\n \u010cesk\u00e1 televize<\/p>\n","protected":false},"excerpt":{"rendered":" Koncem \u00fanora byl mezin\u00e1rodn\u00ed den vz\u00e1cn\u00fdch nemoc\u00ed. Upom\u00ednalo na to speci\u00e1ln\u011b osv\u011btlen\u00e9 budov. Vid\u00edme z\u00e1b\u011bry z pra\u017esk\u00e9ho n\u00e1b\u0159e\u017e\u00ed, kde se zbarvil Tan\u010d\u00edc\u00ed d\u016fm. V \u010cesku […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":48623,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-63145","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/63145","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=63145"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/63145\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/48623"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=63145"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=63145"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=63145"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}