{"id":2421,"date":"2018-02-22T00:00:00","date_gmt":"2018-02-22T00:00:00","guid":{"rendered":"http:\/\/centogene.vl22350.dinaserver.com\/2421"},"modified":"2018-02-22T00:00:00","modified_gmt":"2018-02-22T00:00:00","slug":"prof-arndt-rolfs-dolacza-do-nowo-utworzonej-globalnej-komisji-majacej-na-celu-zakonczenie-odysei-diagnostycznej","status":"publish","type":"post","link":"https:\/\/www.centogene.com\/pl\/prof-arndt-rolfs-joins-newly-formed-global-commission-to-end-the-diagnostic-odyssey\/","title":{"rendered":"Prof. Arndt Rolfs do\u0142\u0105cza do nowo utworzonej \u201cGlobalnej Komisji na rzecz Zako\u0144czenia Diagnostycznej Odysei\u201d"},"content":{"rendered":"<p>Prof. Arndt Rolfs do\u0142\u0105czy\u0142 do nowo utworzonej \u201cGlobalnej Komisji na rzecz Zako\u0144czenia Diagnostycznej Odysei Dzieci\u201d (Global Commission to End the Diagnostic Odyssey for Children), grupy skupiaj\u0105cej innowator\u00f3w technologicznych, rzecznik\u00f3w praw pacjent\u00f3w, pracownik\u00f3w s\u0142u\u017cby zdrowia i badaczy. Komisja pracuje nad planem dzia\u0142ania maj\u0105cym na celu przyspieszenie diagnostyki rzadkich chor\u00f3b u dzieci, aby pom\u00f3c rodzinom dotkni\u0119tym tymi chorobami na ca\u0142ym \u015bwiecie.<\/p>\n<p>Celem jest skr\u00f3cenie wieloletniej drogi, jak\u0105 pacjenci i ich rodziny musz\u0105 przej\u015b\u0107, zanim zostanie zdiagnozowana rzadka choroba. \u015arednio mija 5 lat, zanim pacjent z rzadk\u0105 chorob\u0105, z czego oko\u0142o po\u0142owa to dzieci, otrzyma prawid\u0142ow\u0105 diagnoz\u0119.<\/p>\n<p>Globalna Komisja na rzecz Zako\u0144czenia Diagnostyki Dzieci z Chorobami Rzadkimi zosta\u0142a powo\u0142ana we wsp\u00f3\u0142pracy Shire, Microsoft i EURORDIS-Rare Diseases Europe. Jest to wielodyscyplinarna grupa ekspert\u00f3w, dysponuj\u0105ca kreatywno\u015bci\u0105, wiedz\u0105 technologiczn\u0105 i zaanga\u017cowaniem niezb\u0119dnym do wprowadzenia istotnych zmian w \u017cyciu milion\u00f3w dzieci i ich rodzin. Celem Globalnej Komisji jest opracowanie planu dzia\u0142ania dla obszaru chor\u00f3b rzadkich, koncentruj\u0105cego si\u0119 na rozwi\u0105zaniach w zakresie podstawowych barier uniemo\u017cliwiaj\u0105cych terminow\u0105 diagnoz\u0119 wszystkich chor\u00f3b rzadkich \u2013 ze szczeg\u00f3lnym uwzgl\u0119dnieniem chor\u00f3b dotykaj\u0105cych dzieci. Globalna Komisja zrzesza przedstawicieli wielu sektor\u00f3w, aby przedstawi\u0107 zr\u00f3\u017cnicowane perspektywy dotycz\u0105ce diagnostyki chor\u00f3b rzadkich.<\/p>\n<p>W ramach swojego planu dzia\u0142ania Globalna Komisja przedstawi zalecenia maj\u0105ce na celu usuni\u0119cie podstawowych barier uniemo\u017cliwiaj\u0105cych terminow\u0105 diagnoz\u0119, z kt\u00f3rymi borykaj\u0105 si\u0119 wszyscy pacjenci cierpi\u0105cy na rzadkie choroby, z kt\u00f3rych oko\u0142o po\u0142ow\u0119 stanowi\u0105 dzieci, takich jak:<\/p>\n<ul>\n<li>Poprawa zdolno\u015bci lekarzy do identyfikowania i diagnozowania pacjent\u00f3w z rzadk\u0105 chorob\u0105 w celu rozpocz\u0119cia opieki i leczenia<\/li>\n<li>Umo\u017cliwianie pacjentom i ich rodzinom odgrywania bardziej aktywnej roli w opiece zdrowotnej<\/li>\n<li>Zapewnianie wskaz\u00f3wek dotycz\u0105cych polityki na wysokim szczeblu, kt\u00f3re pomog\u0105 osi\u0105gn\u0105\u0107 lepsze wyniki zdrowotne u pacjent\u00f3w cierpi\u0105cych na rzadkie choroby&nbsp;<\/li>\n<\/ul>\n<p>Wi\u0119cej informacji na temat prowizji znajdziesz <a href=\"https:\/\/www.globalrarediseasecommission.com\/\" target=\"_blank\" title=\"Wi\u0119cej informacji\">strona internetowa.<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>Prof. Arndt Rolfs do\u0142\u0105czy\u0142 do nowo utworzonej \u201cGlobalnej Komisji na rzecz Zako\u0144czenia Diagnostycznej Odysei u Dzieci\u201d, oddanej grupy innowator\u00f3w technologicznych, rzecznik\u00f3w praw pacjent\u00f3w, dostawc\u00f3w us\u0142ug opieki zdrowotnej i badaczy.<\/p>","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-2421","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast 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