\u201eV\u00fdzkum n\u00e1m d\u00e1v\u00e1 nad\u011bji\u201c Spr\u00e1vn\u00e1 l\u00e9\u010dba m\u016f\u017ee lidem se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm zachr\u00e1nit \u017eivot<\/p>\n
Na sv\u011bt\u011b jsou tis\u00edce m\u00e1lo zn\u00e1m\u00fdch nemoc\u00ed, kter\u00fdmi trp\u00ed jen hrstka pacient\u016f. Tato onemocn\u011bn\u00ed se ozna\u010duj\u00ed jako vz\u00e1cn\u00e1. Tak jako ka\u017ed\u00fd rok, i letos m\u00e1 Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed sv\u00e9 st\u011b\u017eejn\u00ed t\u00e9ma, kter\u00e9 charakterizuje slogan \u201eV\u00ddZKUM N\u00c1M D\u00c1V\u00c1 NAD\u011aJI\u201c. Stejn\u00fd n\u00e1zev nese i p\u0159\u00e1telsk\u00e9 setk\u00e1n\u00ed, kter\u00e9 se u p\u0159\u00edle\u017eitosti Dne vz\u00e1cn\u00fdch onemocn\u011bn\u00ed 2017 kon\u00e1 v Mendelov\u011b muzeu Masarykovy univerzity v Brn\u011b dne 1. b\u0159ezna 2017 od 16 hodin. Vstup na akci je voln\u00fd.<\/p>\n
Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed<\/p>\n
Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed se kon\u00e1 ka\u017edoro\u010dn\u011b posledn\u00ed \u00fanorov\u00fd den. Prvn\u00ed Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed se uskute\u010dnil v roce 2008. Od t\u00e9 doby prob\u011bhly t\u00e9m\u011b\u0159 v osmdes\u00e1ti zem\u00edch cel\u00e9ho sv\u011bta tis\u00edce akc\u00ed, kter\u00e9 tento den p\u0159ipom\u00ednaj\u00ed a informuj\u00ed o problematice vz\u00e1cn\u00fdch onemocn\u011bn\u00ed. Smyslem t\u00e9to akce je tedy 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. Tuto akci koordinuje na mezin\u00e1rodn\u00ed \u00farovni EURORDIS (European Rare Diseases Organisation). 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 \u010cesk\u00e9 republice je to \u010cesk\u00e1 asociace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed (\u010cAVO).<\/p>\n
Co je vz\u00e1cn\u00e9 onemocn\u011bn\u00ed<\/p>\n
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). Existuje v\u00edce ne\u017e 7 000 r\u016fzn\u00fdch vz\u00e1cn\u00fdch onemocn\u011bn\u00ed, co\u017e znamen\u00e1, \u017ee souhrnn\u00fd po\u010det pacient\u016f nen\u00ed zanedbateln\u00fd. 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. Poznat vz\u00e1cn\u00e9 onemocn\u011bn\u00ed, tedy stanovit spr\u00e1vnou diagn\u00f3zu, m\u016f\u017ee u t\u011bchto nemocn\u00fdch trvat n\u011bkdy dlouhou dobu, na mnoho vz\u00e1cn\u00fdch chorob dosud neexistuj\u00ed dostate\u010dn\u011b \u00fa\u010dinn\u00e9, p\u0159\u00edpadn\u011b \u017e\u00e1dn\u00e9 l\u00e9ky. L\u00e9\u010dba \u010dasto nen\u00ed v\u016fbec dostupn\u00e1 nebo je velmi n\u00e1kladn\u00e1.<\/p>\n
V\u00fdzkum p\u0159in\u00e1\u0161\u00ed nad\u011bji<\/p>\n
V\u00fdzkum v oblasti vz\u00e1cn\u00fdch nemoc\u00ed je kl\u00ed\u010d, kter\u00fd p\u0159in\u00e1\u0161\u00ed nad\u011bji mili\u00f3n\u016fm lid\u00ed se vz\u00e1cn\u00fdmi nemocemi na cel\u00e9m sv\u011bt\u011b a tak\u00e9 jejich rodin\u00e1m. Je to nad\u011bje, \u017ee l\u00e9ka\u0159i budou schopni v\u010das stanovit spr\u00e1vnou diagn\u00f3zu vz\u00e1cn\u00e9ho onemocn\u011bn\u00ed, \u017ee budou rychleji vznikat nov\u00e9 a \u00fa\u010dinn\u00e9 l\u00e9ky pro tyto pacienty.<\/p>\n
\u201eV\u00fdzkum nemus\u00edme ch\u00e1pat pouze jako v\u011bdeckou pr\u00e1ci ukrytou v modern\u00edch laborato\u0159\u00edch, ale tak\u00e9 jako objevov\u00e1n\u00ed lid\u00ed, kte\u0159\u00ed museli sv\u016fj \u017eivot pod\u0159\u00eddit vz\u00e1cn\u00e9 nemoci, objevov\u00e1n\u00ed jejich pot\u0159eb i p\u0159\u00e1n\u00ed\u2026 a tak\u00e9 objevov\u00e1n\u00ed mo\u017enost\u00ed, jak t\u011bmto lidem a jejich rodin\u00e1m pom\u00e1hat. I na to upozor\u0148uje Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed 2017,\u201c uvedla Renata Gaillyov\u00e1, prim\u00e1\u0159ka Odd\u011blen\u00ed l\u00e9ka\u0159sk\u00e9 genetiky FN Brno, kter\u00e1 je jedn\u00edm z hlavn\u00edch organiz\u00e1tor\u016f p\u0159ipravovan\u00e9 besedy.<\/p>\n
Akce se z\u00fa\u010dastn\u00ed<\/p>\n
V diskusi vystoup\u00ed z\u00e1stupci z \u0159ad p\u0159edstavitel\u016f m\u011bsta Brna, medic\u00ednsk\u00fdch odborn\u00edk\u016f, z\u00e1stupci organizac\u00ed podporuj\u00edc\u00edch pacienty se vz\u00e1cn\u00fdmi nemocemi i sami nemocn\u00ed.<\/p>\n
* Roman Kraus \u2013 \u0159editel Fakultn\u00ed nemocnice Brno<\/p>\n
* Milan Macek \u2013 p\u0159ednosta \u00daBLG 1. LF UK a FN Motol, N\u00e1rodn\u00ed koordina\u010dn\u00ed centrum pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed<\/p>\n
* Jan Vitula \u2013 \u010dlen Rady JMK pro oblast region\u00e1ln\u00edho rozvoje v oblasti \u0161kolstv\u00ed, v\u011bdy a v\u00fdzkumu<\/p>\n
* Oto Lipovsk\u00fd \u2013 vedouc\u00ed Odboru zdravotnictv\u00ed Jihomoravsk\u00e9ho kraje<\/p>\n
* Anna Arellanesov\u00e1 a Ren\u00e9 B\u0159e\u010d\u0165an \u2013 p\u0159edsedkyn\u011b a m\u00edstop\u0159edseda \u010cesk\u00e9 asociace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed<\/p>\n
* Hana Bu\u010dkov\u00e1, Alena Hol\u010d\u00edkov\u00e1, Luk\u00e1\u0161 Homola, Hana O\u0161lej\u0161kov\u00e1, Renata Gaillyov\u00e1 \u2013 EB a CF Centra a Klinika d\u011btsk\u00fdch infek\u010dn\u00edch nemoc\u00ed FN Brno<\/p>\n
* Simona Z\u00e1bransk\u00e1 \u2013 \u0159editelka Klubu nemocn\u00fdch cystickou fibr\u00f3zou<\/p>\n
* Lucie Markov\u00e1 \u2013 \u0159editelka organizace DEBRA \u010cR<\/p>\n
* Helena Ko\u010dov\u00e1 \u2013 N\u00e1rodn\u00ed rada osob se zdravotn\u00edm posti\u017een\u00edm, Pacientsk\u00e1 organizace rodin se SMA<\/p>\n
* Jan Michal\u00edk, Ivana Rygalov\u00e1 \u2013 Centrum prov\u00e1zen\u00ed<\/p>\n
* dal\u0161\u00ed vz\u00e1cn\u00ed a zaj\u00edmav\u00ed host\u00e9<\/p>\n
Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed 2017 moderuje Igor Dost\u00e1lek. V programu vystoup\u00ed D\u011btsk\u00e9 studio Divadla kj\u00f3genu.<\/p>\n","protected":false},"excerpt":{"rendered":"
\u201eV\u00fdzkum n\u00e1m d\u00e1v\u00e1 nad\u011bji\u201c Spr\u00e1vn\u00e1 l\u00e9\u010dba m\u016f\u017ee lidem se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm zachr\u00e1nit \u017eivot<\/p>\n<\/div>","protected":false},"author":1,"featured_media":15130,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-27359","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/27359","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=27359"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/27359\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/15130"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=27359"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=27359"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=27359"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}