{"id":25863,"date":"2016-06-20T11:13:27","date_gmt":"2016-06-20T09:13:27","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=25863"},"modified":"2016-06-20T11:13:27","modified_gmt":"2016-06-20T09:13:27","slug":"na-charitu-prispivaji-dve-tretiny-populace","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=25863","title":{"rendered":"Na charitu p\u0159isp\u00edvaj\u00ed dv\u011b t\u0159etiny populace"},"content":{"rendered":"

Ka\u017ed\u00fd p\u00e1t\u00fd \u010cech d\u00e1v\u00e1 na charitu v\u00edce ne\u017e 500 korun ro\u010dn\u011b, stejn\u011b \u0161t\u011bd\u0159\u00ed jsou mu\u017ei i \u017eeny. Vypl\u00fdv\u00e1 to z pr\u016fzkumu agentury Ipsos, kter\u00fd vypracovala pro organizaci DEBRA \u010cR, je\u017e pom\u00e1h\u00e1 pacient\u016fm s nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel.<\/strong><\/p>\n

Neziskov\u00e1 organizace DEBRA \u010cR uskute\u010dnila p\u0159ed dvan\u00e1cti lety v \u010cesk\u00e9 republice doslova revoluci v p\u00e9\u010di o lidi trp\u00edc\u00ed krutou nevyl\u00e9\u010ditelnou nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel. Vedle systematick\u00e9 l\u00e9ka\u0159sk\u00e9 p\u00e9\u010de, ji\u017e DEBRA zaji\u0161\u0165uje spolu s jedin\u00fdm specializovan\u00fdm EB centrem v Brn\u011b, se organizace sna\u017e\u00ed zvy\u0161ovat pov\u011bdom\u00ed ve\u0159ejnosti o tomto genetick\u00e9m onemocn\u011bn\u00ed. Podle pr\u016fzkumu agentury Ipsos tak dnes nemoc mot\u00fdl\u00edch k\u0159\u00eddel zn\u00e1 ji\u017e 73 procent populace.<\/p>\n

\u201eJe to skv\u011bl\u00e9 \u010d\u00edslo. Nen\u00ed to dlouho, kdy sami l\u00e9ka\u0159i nem\u011bli dostatek informac\u00ed o t\u00e9to chorob\u011b. Rodi\u010de pak dlouh\u00e1 l\u00e9ta p\u00e1trali po diagn\u00f3ze sv\u00fdch d\u011bt\u00ed. Kvalita \u017eivota mal\u00fdch pacient\u016f byla velmi n\u00edzk\u00e1, trp\u011bli v\u011bt\u0161\u00edmi bolestmi, strachem, nem\u011bli ani odpov\u00eddaj\u00edc\u00ed terapeutick\u00e9 materi\u00e1ly. \u010casto tehdy bohu\u017eel um\u00edrali na b\u011b\u017en\u00e1 infek\u010dn\u00ed onemocn\u011bn\u00ed,\u201c \u0159\u00edk\u00e1 prim\u00e1\u0159ka D\u011btsk\u00e9ho ko\u017en\u00edho odd\u011blen\u00ed FN Brno a zakladatelka EB centra MUDr. Hana Bu\u010dkov\u00e1 a dod\u00e1v\u00e1: \u201eNemoc mot\u00fdl\u00edch k\u0159\u00eddel je nevyl\u00e9\u010diteln\u00e1, dnes u\u017e ale m\u00e1me dostatek znalost\u00ed i l\u00e9\u010debn\u00fdch pom\u016fcek, kter\u00e9 pom\u00e1haj\u00ed pacient\u016fm jejich t\u011b\u017ek\u00fd \u00fad\u011bl zvl\u00e1dnout. To, s \u010d\u00edm se ale st\u00e1le pot\u00fdkaj\u00ed, je nepochopen\u00ed ze strany ve\u0159ejnosti. Kdy\u017e m\u00e1te viditeln\u011b nemocnou, k\u0159ehkou k\u016f\u017ei, je to spole\u010densk\u00e9 stigma. Proto je pro n\u00e1s skv\u011blou zpr\u00e1vou, \u017ee se st\u00e1le v\u00edce lid\u00ed o nemoci mot\u00fdl\u00edch k\u0159\u00eddel dozv\u00edd\u00e1 a na\u0161i pacienti vystupuj\u00ed ze sv\u00e9 soci\u00e1ln\u00ed izolace.\u201c<\/p>\n

Spont\u00e1nn\u00ed znalost nemoci mot\u00fdl\u00edch k\u0159\u00eddel je podle agentury Ipsos vy\u0161\u0161\u00ed u \u017een (78 %) ne\u017e u mu\u017e\u016f (68 %).<\/p>\n

\u010ce\u0161i jsou \u0161t\u011bd\u0159\u00ed d\u00e1rci <\/strong><\/p>\n

P\u0159es osmn\u00e1ct procent \u010cech\u016f v\u011bnuje ro\u010dn\u011b na podporu neziskov\u00fdch organizac\u00ed v\u00edce ne\u017e 500 korun ro\u010dn\u011b. V objemu ro\u010dn\u00edch p\u0159\u00edsp\u011bvk\u016f na libovoln\u00e9 charitativn\u00ed \u00fa\u010dely pak velk\u00e9 genderov\u00e9 rozd\u00edly nejsou. N\u011bjakou \u010d\u00e1stku, tedy v\u00edce ne\u017e 1 korunu, pak v\u011bnuje na ve\u0159ejn\u011b prosp\u011b\u0161n\u00e9 aktivity 62 procent \u017een a 66 procent mu\u017e\u016f. Nej\u0161t\u011bd\u0159ej\u0161\u00edmi jsou pak d\u00e1rci ve v\u011bkov\u00e9 kategorii 55\u201370 let. Nejm\u00e9n\u011b naopak v\u011bnuj\u00ed lid\u00e9 od 18 do 34 let. (Graf naleznete v p\u0159\u00edloze.)<\/p>\n

DEBRA \u010cR<\/p>\n

V \u010cesk\u00e9 republice \u017eij\u00ed stovky lid\u00ed, p\u0159edev\u0161\u00edm d\u011bt\u00ed, s nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel. DEBRA \u010cR je jedinou organizac\u00ed u n\u00e1s, kter\u00e1 se p\u00e9\u010di o n\u011b systematicky v\u011bnuje. D\u00edky n\u00ed a klinick\u00e9mu EB centru v Brn\u011b dnes na p\u00e9\u010di dos\u00e1hne ka\u017ed\u00fd pacient s touto diagn\u00f3zou. EB centrum bylo zalo\u017eeno v roce 2001, DEBRA \u010cR vznikla o t\u0159i roky pozd\u011bji. P\u016fvodn\u011b p\u016fsobilo v klinick\u00e9m centru p\u011bt specialist\u016f. Jejich po\u010det se za posledn\u00edch 12 let zv\u00fd\u0161il \u010dty\u0159n\u00e1sobn\u011b. Za devaten\u00e1cti odborn\u00edky dnes doj\u00ed\u017ed\u011bj\u00ed pacienti z cel\u00e9 \u010cesk\u00e9 republiky. DEBRA jim pom\u00e1h\u00e1 zaji\u0161\u0165ovat \u0161irok\u00e9 spektrum slu\u017eeb od l\u00e9\u010debn\u00fdch materi\u00e1l\u016f po v\u00fd\u017eivov\u00e9ho terapeuta.<\/p>\n

Patronkou organizace DEBRA je Jitka \u010cvan\u010darov\u00e1. Ka\u017ed\u00fd rok pak DEBRA vyd\u00e1v\u00e1 charitativn\u00ed kalend\u00e1\u0159 12 plus 12, ve kter\u00e9m vystupuj\u00ed ve\u0159ejn\u011b zn\u00e1m\u00e9 osobnosti na podporu pacient\u016f s nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel. I d\u00edky t\u00e9to aktivit\u011b roste pov\u011bdom\u00ed ve\u0159ejnosti o existenci t\u00e9to choroby.<\/p>\n

V\u00fdzkum Ipsos<\/p>\n

V\u00fdzkum pro bono zrealizovala v\u00fdzkumn\u00e1 agentura Ipsos pro organizaci DEBRA \u010cesk\u00e1 republika.<\/p>\n

V\u00fdzkum prob\u011bhl metodou online dotazov\u00e1n\u00ed na reprezentativn\u00edm vzorku dosp\u011bl\u00e9 internetov\u00e9 populace (dle regionu, velikosti m\u00edsta bydli\u0161t\u011b, pohlav\u00ed, v\u011bku a vzd\u011bl\u00e1n\u00ed). Velikost v\u00fdb\u011brov\u00e9ho souboru byla 802 respondent\u016f. Ipsos poskytuje komplexn\u00ed slu\u017eby v oblasti pr\u016fzkumu trhu a ve\u0159ejn\u00e9ho m\u00edn\u011bn\u00ed v\u010detn\u011b konzulta\u010dn\u00ed \u010dinnosti. Je nejv\u011bt\u0161\u00ed agenturou v\u00fdzkumu trhu a ve\u0159ejn\u00e9ho m\u00edn\u011bn\u00ed v \u010cR z hlediska dosa\u017een\u00e9ho ro\u010dn\u00edho obratu. Spolupracuje s pobo\u010dkami s\u00edt\u011b Ipsos v 87 zem\u00edch sv\u011bta. Disponuje modern\u00edm technick\u00fdm z\u00e1zem\u00edm pro sb\u011br a zpracov\u00e1n\u00ed dat a vyu\u017e\u00edv\u00e1 tak\u00e9 know-how specializovan\u00fdch diviz\u00ed Ipsos Loyalty, Ipsos Marketing, Ipsos Connect, Ipsos Public Affairs, Ipsos CEM a Ipsos UU. Je \u010dlenem organizac\u00ed ESOMAR, MSPA, SIMAR a SAVA, \u0159\u00edd\u00ed se jejich etick\u00fdmi principy a metodick\u00fdmi pravidly.<\/p>\n","protected":false},"excerpt":{"rendered":"

Ka\u017ed\u00fd p\u00e1t\u00fd \u010cech d\u00e1v\u00e1 na charitu v\u00edce ne\u017e 500 korun ro\u010dn\u011b, stejn\u011b \u0161t\u011bd\u0159\u00ed jsou mu\u017ei i \u017eeny. Vypl\u00fdv\u00e1 to z pr\u016fzkumu agentury Ipsos, kter\u00fd vypracovala […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14570,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-25863","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\/25863","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=25863"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/25863\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14570"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=25863"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=25863"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=25863"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}