{"id":261,"date":"2026-04-10T13:08:13","date_gmt":"2026-04-10T11:08:13","guid":{"rendered":"https:\/\/www.urtikariaverband.eu\/?page_id=261"},"modified":"2026-04-20T13:52:22","modified_gmt":"2026-04-20T11:52:22","slug":"gruendung","status":"publish","type":"page","link":"https:\/\/www.urtikariaverband.eu\/cs\/gruendung\/","title":{"rendered":"zalo\u017een\u00ed"},"content":{"rendered":"

Silvie Gross a jej\u00ed vize pro lidi s kop\u0159ivkou<\/strong><\/h2>\n\n\n\n

Silvie Gross je inici\u00e1torkou a zakladatelkou sdru\u017een\u00ed Urticaria Association.<\/p>\n\n\n\n

My\u0161lenka vznikla po mnoha letech vlastn\u00ed v\u00e1\u017en\u00e9 nemoci v roce 2015.<\/p>\n\n\n\n

V roce 2007 j\u00ed byla diagnostikov\u00e1na CSU a byla v\u00edce ne\u017e deset let posti\u017eena ka\u017edodenn\u00edmi vzplanut\u00edmi, angioed\u00e9mem a anafylax\u00ed.<\/p>\n\n\n\n

V roce 2018 bylo prov\u00e1d\u011bn\u00ed dosa\u017eeno spole\u010dn\u011b s malou skupinou dot\u010den\u00fdch osob.<\/p>\n\n\n\n

Zku\u0161enosti se syst\u00e9mem<\/p>\n\n\n\n

V n\u00e1sleduj\u00edc\u00edch letech se Silvie intenzivn\u011b pohybovala ve zdravotnick\u00e9 a sv\u00e9pomocn\u00e9 krajin\u011b, \u00fa\u010dastnila se mezin\u00e1rodn\u00edch kongres\u016f a spolupracovala s v\u00fdzkumn\u00edky a organizacemi z r\u016fzn\u00fdch zem\u00ed.<\/p>\n\n\n\n

Uk\u00e1zalo se, \u017ee nez\u00e1visl\u00fd hlas pacient\u016f v existuj\u00edc\u00edch struktur\u00e1ch nen\u00ed t\u00e9m\u011b\u0159 zam\u00fd\u0161len, i kdy\u017e se vn\u011bj\u0161\u00edmu sv\u011btu \u010dasto jev\u00ed jinak.<\/p>\n\n\n\n

Klasifikace<\/p>\n\n\n\n

Silviino syst\u00e9mov\u00e9 porozum\u011bn\u00ed vedlo k hlub\u0161\u00edmu pochopen\u00ed vztah\u016f mezi v\u00fdzkumem, p\u00e9\u010d\u00ed, organizacemi a z\u00e1jmy. <\/p>\n\n\n\n

Uznala, \u017ee mnoh\u00e1 rozhodnut\u00ed nejsou p\u0159ij\u00edm\u00e1na v\u00fdhradn\u011b v z\u00e1jmu pacient\u016f a \u017ee sv\u00e9pomocn\u00e9 organizace hraj\u00ed zvl\u00e1\u0161tn\u00ed \u00falohu vzhledem k jejich p\u0159\u00edstupu k posti\u017een\u00fdm osob\u00e1m, a jsou proto velmi n\u00e1chyln\u00e9 k ovliv\u0148ov\u00e1n\u00ed.<\/p>\n\n\n\n

d\u016fsledek<\/p>\n\n\n\n

Silvie se rozhodla j\u00edt jinou cestou.<\/p>\n\n\n\n

Nez\u00e1vislost a transparentnost se staly \u00fast\u0159edn\u00edm bodem jej\u00ed pr\u00e1ce. I kdyby to znamenalo odtrhnout se od existuj\u00edc\u00edch struktur.<\/p>\n\n\n\n

Dnes<\/p>\n\n\n\n

Dnes pracuje na anal\u00fdze a klasifikaci t\u011bchto vztah\u016f a rozv\u00edj\u00ed p\u0159\u00edstupy k nez\u00e1visl\u00e9, transparentn\u00ed sv\u00e9pomoci.<\/p>\n\n\n\n

Dal\u0161\u00ed d\u016fraz je kladen na digitalizaci a digit\u00e1ln\u00ed zdrav\u00ed a na ot\u00e1zku, jak se v t\u00e9to souvislosti m\u016f\u017ee sv\u00e9pomoc p\u0159em\u00edstit. P\u00ed\u0161e, p\u0159edn\u00e1\u0161\u00ed a vyv\u00edj\u00ed form\u00e1ty, aby tyto znalosti byly p\u0159\u00edstupn\u00e9 co nej\u0161ir\u0161\u00edmu publiku.<\/p>\n\n\n\n

Silvie je dodnes p\u0159edsedkyn\u00ed spolku. Jak dlouho bude k dispozici jako p\u0159edseda, nen\u00ed jasn\u00e9. <\/p>","protected":false},"excerpt":{"rendered":"

Silvie Gross a jej\u00ed vize pro lidi s kop\u0159ivkou Silvie Gross je inici\u00e1torem a zakladatelem asociace kop\u0159ivky. My\u0161lenka vznikla po mnoha letech vlastn\u00ed v\u00e1\u017en\u00e9 nemoci v roce 2015. V roce 2007 j\u00ed byla diagnostikov\u00e1na CSU a byla v\u00edce ne\u017e deset let posti\u017eena ka\u017edodenn\u00edmi vzplanut\u00edmi, angioed\u00e9mem a anafylax\u00ed. V roce 2018 byla realizov\u00e1na spole\u010dn\u011b s mal\u00fdm [\u2026]<\/p>","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"class_list":["post-261","page","type-page","status-publish","hentry"],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/www.urtikariaverband.eu\/cs\/wp-json\/wp\/v2\/pages\/261","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.urtikariaverband.eu\/cs\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.urtikariaverband.eu\/cs\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.urtikariaverband.eu\/cs\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.urtikariaverband.eu\/cs\/wp-json\/wp\/v2\/comments?post=261"}],"version-history":[{"count":12,"href":"https:\/\/www.urtikariaverband.eu\/cs\/wp-json\/wp\/v2\/pages\/261\/revisions"}],"predecessor-version":[{"id":764,"href":"https:\/\/www.urtikariaverband.eu\/cs\/wp-json\/wp\/v2\/pages\/261\/revisions\/764"}],"wp:attachment":[{"href":"https:\/\/www.urtikariaverband.eu\/cs\/wp-json\/wp\/v2\/media?parent=261"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}