Vz\u00e1cn\u00e1 onemocn\u011bn\u00ed b\u00fdvaj\u00ed zpravidla multisyst\u00e9mov\u00e1 s v\u00fdznamn\u00fdm dopadem na kvalitu \u017eivota a soci\u00e1ln\u00ed za\u010dlen\u011bn\u00ed pacient\u016f. Postihuj\u00ed m\u00e9n\u011b ne\u017e p\u011bt pacient\u016f z 10 000 osob. P\u0159esto\u017ee jsou vz\u00e1cn\u00e1 onemocn\u011bn\u00ed individu\u00e1ln\u011b raritn\u00ed, existuj\u00ed jich tis\u00edce. \u010casto se objevuj\u00ed po narozen\u00ed (mohou se t\u00fdkat a\u017e 5 % novorozenc\u016f), ale tak\u00e9 v dosp\u011blosti. Problematiku p\u0159ibli\u017euje Ren\u00e9 B\u0159e\u010d\u0165an, m\u00edstop\u0159edseda \u010cesk\u00e9 asociace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed (\u010cAVO).<\/p>\n
– Jak\u00fd byl hlavn\u00ed d\u016fvod zalo\u017een\u00ed asociace?<\/p>\n
\u010desk\u00e1 asociace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed vznikla v roce 2012 z pot\u0159eby n\u011bkolika pacientsk\u00fdch organizac\u00ed, aby oblast vz\u00e1cn\u00fdch onemocn\u011bn\u00ed mohla b\u00fdt reprezentativn\u011b a v cel\u00e9 \u0161\u00ed\u0159i zastupov\u00e1na, p\u0159edev\u0161\u00edm p\u0159i jedn\u00e1n\u00edch se st\u00e1tn\u00ed spr\u00e1vou, ale tak\u00e9 v jedn\u00e1n\u00edch v r\u00e1mci eu. existuje n\u011bkolik tis\u00edc vz\u00e1cn\u00fdch onemocn\u011bn\u00ed a v \u010dr n\u011bkolik des\u00edtek pacientsk\u00fdch organizac\u00ed zastupuj\u00edc\u00edch n\u011bkter\u00e9 z t\u011bchto diagn\u00f3z. Ka\u017ed\u00e9 onemocn\u011bn\u00ed s sebou nese specifick\u00e9 pot\u0159eby, kter\u00e9 prosazuje konkr\u00e9tn\u00ed pacientsk\u00e1 organizace. pro prosazen\u00ed spole\u010dn\u00fdch c\u00edl\u016f a jednotn\u00fd hlas nemocn\u00fdch se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm v\u0161ak zalo\u017een\u00ed asociace bylo nezbytn\u00e9.<\/p>\n
– Kter\u00e9 subjekty sdru\u017eujete?<\/p>\n
v sou\u010dasn\u00e9 dob\u011b tedy p\u016fsob\u00edme ji\u017e 4 roky a \u010davO m\u00e1 29 \u010dlen\u016f z \u0159ad pacientsk\u00fdch organizac\u00ed. D\u00e1le zastupujeme pacienty dal\u0161\u00edch 25 diagn\u00f3z, kte\u0159\u00ed zat\u00edm pacientskou organizaci nemaj\u00ed. \u010davO v\u0161ak zast\u0159e\u0161uje vz\u00e1cn\u00e1 onemocn\u011bn\u00ed jako celek a t\u00edm pom\u00e1h\u00e1 i t\u011bm, kte\u0159\u00ed nijak sdru\u017eeni nejsou.<\/p>\n
– Jak\u00e9 akce jste organizovali v leto\u0161n\u00edm roce?<\/p>\n
mezi nejv\u00fdznamn\u011bj\u0161\u00ed a viditeln\u00e9 aktivity pat\u0159\u00ed Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed, kter\u00fd v roce 2016 p\u0159ipadl na 29. \u00fanor. v r\u00e1mci tohoto dne jsme organizovali informa\u010dn\u00ed kampa\u0148 s vyu\u017eit\u00edm dostupn\u00fdch komunika\u010dn\u00edch kan\u00e1l\u016f, jako jsou tisk, televize, obrazovky v nemocnic\u00edch, internet atd. D\u00e1le jsme v r\u00e1mci akce uspo\u0159\u00e1dali odborn\u00fd semin\u00e1\u0159 v poslaneck\u00e9 sn\u011bmovn\u011b a organizovali \u0159adu p\u0159edn\u00e1\u0161ek. v r\u00e1mci projektu nazvan\u00e9ho v\u010dasn\u00e1 diagnostika se sna\u017e\u00edme p\u0159ibl\u00ed\u017eit oblast vz\u00e1cn\u00fdch onemocn\u011bn\u00ed praktick\u00fdm l\u00e9ka\u0159\u016fm, p\u0159edev\u0161\u00edm pak pediatr\u016fm. zde se \u00fa\u010dastn\u00edme i region\u00e1ln\u00edch konferenc\u00ed. v\u00fdznamnou pomoc\u00ed je i tzv. helplinka, kterou provozujeme ve spolupr\u00e1ci s n\u00e1rodn\u00edm koordina\u010dn\u00edm centrem pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed (nKcvO) p\u0159i 2. lf uK v praze-motole. projekt v\u010dasn\u00e1 diagnostika je kontinu\u00e1ln\u00ed soubor aktivit, kter\u00e9 p\u0159isp\u00edvaj\u00ed k urychlen\u00ed a v\u010dasn\u00e9mu rozpozn\u00e1n\u00ed p\u0159\u00edznak\u016f n\u011bkter\u00e9ho ze vz\u00e1cn\u00fdch onemocn\u011bn\u00ed. v\u00fdznamnou sou\u010d\u00e1st\u00ed je projekt vzd\u011bl\u00e1v\u00e1n\u00ed medik\u016f, kdy na praktick\u00e1 cvi\u010den\u00ed student\u016f doch\u00e1zej\u00ed v\u017edy konkr\u00e9tn\u00ed pacienti za vybran\u00e1 onemocn\u011bn\u00ed. studenti tak maj\u00ed mo\u017enost vid\u011bt konkr\u00e9tn\u00ed onemocn\u011bn\u00ed v praxi a nav\u00edc z\u00edskaj\u00ed ve\u0161ker\u00e9 informace o rozpozn\u00e1n\u00ed a projevech dan\u00e9ho vz\u00e1cn\u00e9ho onemocn\u011bn\u00ed. tyto aktivity realizovan\u00e9 ve spolupr\u00e1ci s 2. lf uK p\u0159i fn v motole budeme v roce 2017 roz\u0161i\u0159ovat na dal\u0161\u00ed fakulty v \u010dr. mezi v\u00fdznamn\u00e9 mezin\u00e1rodn\u00ed projekty pat\u0159\u00ed spolupr\u00e1ce s norsk\u00fdm centrem pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed frambu, nejstar\u0161\u00ed evropskou takto zam\u011b\u0159enou organizac\u00ed. v r\u00e1mci grantu norsk\u00fdch fond\u016f a spolupr\u00e1ci sublG p\u0159i fn motol vyj\u00ed\u017ed\u011bj\u00ed \u010dlenov\u00e9 \u2013 reprezentanti pacientsk\u00fdch organizac\u00ed na n\u011bkolikadenn\u00ed vzd\u011bl\u00e1vac\u00ed pobyty do t\u00e9to norsk\u00e9 organizace. Ji\u017e v roce 2015 jsme zah\u00e1jili projekt www.vz\u00e1cni. cz. Jedn\u00e1 se o velice n\u00e1ro\u010dn\u00fd, ale d\u016fle\u017eit\u00fd po\u010din. v r\u00e1mci tohoto projektu prezentujeme v\u017edy konkr\u00e9tn\u00ed p\u0159\u00edb\u011bh nemocn\u00e9ho se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm a k dan\u00e9 diagn\u00f3ze uv\u00e1d\u00edme ve\u0161ker\u00e9 dal\u0161\u00ed odborn\u00e9 informace o projevech, v\u00fdskytu nemoci, ale t\u00e9\u017e odkazy na pacientsk\u00e9 organizace nebo odborn\u00e1 centra. za tento projekt jsme v roce 2016 dostali hlavn\u00ed cenu vl\u00e1dn\u00edho v\u00fdboru pro zdravotn\u011b posti\u017een\u00e9 ob\u010dany (vvzpO) v kategorii publikace.<\/p>\n
– Co pl\u00e1nujete do dal\u0161\u00edho obdob\u00ed?<\/p>\n
v sou\u010dasn\u00e9 dob\u011b p\u0159ipravujeme aktivity pro Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed, kter\u00fd se uskute\u010dn\u00ed 28. \u00fanora 2017. Ji\u017e tradi\u010dn\u011b budeme m\u00edt k dispozici televizn\u00ed spot a \u0159adu podp\u016frn\u00fdch materi\u00e1l\u016f i pro na\u0161e \u010dlensk\u00e9 organizace. v r\u00e1mci tohoto dne, sp\u00ed\u0161e cel\u00e9ho t\u00fddne, p\u0159ipravujeme t\u00e9\u017e odborn\u00e9 semin\u00e1\u0159e a konference. budeme d\u00e1le rozv\u00edjet projekt v\u010dasn\u00e9 diagnostiky a vzd\u011bl\u00e1v\u00e1n\u00ed, kde se do spolupr\u00e1ce s na\u0161imi pacienty zapoj\u00ed n\u011bkolik dal\u0161\u00edch l\u00e9ka\u0159sk\u00fdch fakult v \u010desk\u00e9 republice. Oblast vz\u00e1cn\u00fdch onemocn\u011bn\u00ed byla v minulosti p\u0159ehl\u00ed\u017eena, nebyla jim v\u011bnov\u00e1na pat\u0159i\u010dn\u00e1 pozornost. p\u0159itom v sou\u010dasn\u00e9 dob\u011b ji\u017e rozezn\u00e1v\u00e1me v\u00edce ne\u017e 6000 t\u011bchto diagn\u00f3z. p\u0159esto\u017ee n\u011bkter\u00e9 z nich jsou opravdu velmi raritn\u00ed, \u0159ada z nich je velice zn\u00e1m\u00e1 i ve\u0159ejnosti. bohu\u017eel, pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed nen\u00ed ve v\u011bt\u0161in\u011b p\u0159\u00edpad\u016f k dispozici \u00fa\u010dinn\u00e1 l\u00e9\u010dba, a tak pacienti \u010del\u00ed progreduj\u00edc\u00edm n\u00e1sledk\u016fm onemocn\u011bn\u00ed po cel\u00fd \u017eivot. na\u0161im moment\u00e1ln\u00edm c\u00edlem je za\u0159adit oblast vz\u00e1cn\u00fdch onemocn\u011bn\u00ed mezi prioritn\u00ed oblasti l\u00e9\u010dby v \u010dr. usilujeme o systematick\u00fd vznik tzv. odborn\u00fdch center l\u00e9\u010dby. v\u011b\u0159\u00edme, \u017ee se n\u00e1m to poda\u0159\u00ed. byli bychom r\u00e1di, kdyby se u n\u00e1s problematice vz\u00e1cn\u00fdch onemocn\u011bn\u00ed v\u011bnovala v\u011bt\u0161\u00ed pozornost a p\u00e9\u010de. na ned\u00e1vn\u00e9 konferenci pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed jsme sly\u0161eli velmi zaj\u00edmav\u00fd cit\u00e1t v angli\u010dtin\u011b \u2013 „rare but exemplary“. Dal by se vysv\u011btlit tak, \u017ee vysp\u011blost a vysok\u00e1 \u00farove\u0148 zdravotnictv\u00ed dan\u00e9ho st\u00e1tu se pozn\u00e1 podle toho, jak se v\u011bnuje okrajov\u00fdm skupin\u00e1m.<\/p>\n
O autorovi: Josef Z\u00e1bransk\u00fd, Ing. Ren\u00e9 B\u0159e\u010d\u0165an, m\u00edstop\u0159edseda \u010cAVO<\/p>\n
Zdravotnick\u00e9 noviny<\/p>\n","protected":false},"excerpt":{"rendered":"
Vz\u00e1cn\u00e1 onemocn\u011bn\u00ed b\u00fdvaj\u00ed zpravidla multisyst\u00e9mov\u00e1 s v\u00fdznamn\u00fdm dopadem na kvalitu \u017eivota a soci\u00e1ln\u00ed za\u010dlen\u011bn\u00ed pacient\u016f. Postihuj\u00ed m\u00e9n\u011b ne\u017e p\u011bt pacient\u016f z 10 000 osob. P\u0159esto\u017ee […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14568,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-27039","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\/27039","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=27039"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/27039\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14568"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=27039"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=27039"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=27039"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}