{"id":2365,"date":"2020-03-17T00:00:00","date_gmt":"2020-03-17T00:00:00","guid":{"rendered":"http:\/\/centogene.vl22350.dinaserver.com\/2365"},"modified":"2020-03-17T00:00:00","modified_gmt":"2020-03-17T00:00:00","slug":"centogene-omer-i-alibers-wydarzenie-z-okazji-dnia-chorob-rzadkich-w-meksyku-w-2020-roku-inspirujace-spostrzezenia-na-temat-wkladu-organizacji-pacjentow-w-rozwiazania-dla-pacjentow-w-ameryce-lacinski","status":"publish","type":"post","link":"https:\/\/www.centogene.com\/pl\/centogene-omer-and-alibers-rare-disease-day-event-in-mexico-city-2020-inspiring-insights-on-patient-organizations-contributions-to-solutions-for-patients-in-latin-america\/","title":{"rendered":"Wydarzenie CENTOGENE, OMER i ALIBER z okazji Dnia Chor\u00f3b Rzadkich w Meksyku 2020: Inspiruj\u0105ce spostrze\u017cenia na temat wk\u0142adu organizacji pacjenckich w rozwi\u0105zania dla pacjent\u00f3w w Ameryce \u0141aci\u0144skiej"},"content":{"rendered":"<ul>\n<li>\n<ul>\n<li>Z okazji Mi\u0119dzynarodowego Dnia Chor\u00f3b Rzadkich, przypadaj\u0105cego na 29 lutego, Iberoameryka\u0144ski Sojusz na rzecz Chor\u00f3b Rzadkich, Sierocych i Zaka\u017anych (ALIBER), Meksyka\u0144ska Organizacja na rzecz Chor\u00f3b Rzadkich (OMER) oraz CENTOGENE go\u015bci\u0142y pacjent\u00f3w i ich rodziny, a tak\u017ce rzecznik\u00f3w praw pacjent\u00f3w i pracownik\u00f3w s\u0142u\u017cby zdrowia z ca\u0142ej Ameryki \u0141aci\u0144skiej.<\/li>\n<\/ul>\n<ul>\n<li>Rzadka choroba to choroba, kt\u00f3ra dotyka mniej ni\u017c 5 na 10 000 os\u00f3b. \u0141\u0105cznie na rzadkie choroby choruje wi\u0119cej os\u00f3b ni\u017c na raka i HIV razem wzi\u0119te.<\/li>\n<\/ul>\n<ul>\n<li>Szacuje si\u0119, \u017ce na rzadk\u0105 chorob\u0119 cierpi oko\u0142o 8 milion\u00f3w Meksykan\u00f3w, co stanowi 5% populacji.<\/li>\n<\/ul>\n<ul>\n<li>W Meksyku dzia\u0142a oko\u0142o 180 aktywnych stowarzysze\u0144 pacjent\u00f3w cierpi\u0105cych na choroby rzadkie.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p>Meksyk, 29 lutego 2020 r. \u2013 Ponad 300 uczestnik\u00f3w zebra\u0142o si\u0119 w sobot\u0119 w hotelu Marriott Reforma w Meksyku, aby podnie\u015b\u0107 \u015bwiadomo\u015b\u0107 na temat chor\u00f3b rzadkich w Mi\u0119dzynarodowym Dniu Chor\u00f3b Rzadkich. Pacjenci, rodziny dotkni\u0119te tymi chorobami, mi\u0119dzynarodowe stowarzyszenia pacjent\u00f3w, naukowcy, specjali\u015bci medyczni i przedstawiciele sektora prywatnego dzielili si\u0119 do\u015bwiadczeniami i omawiali badania, mo\u017cliwo\u015bci diagnostyczne, metody leczenia i obszary wsp\u00f3\u0142pracy.<\/p>\n<p>Wydarzenie stanowi\u0142o platform\u0119 do dyskusji na temat roli stowarzysze\u0144 pacjent\u00f3w i ich cennego wk\u0142adu w zapewnienie pacjentom cierpi\u0105cym na rzadkie choroby dost\u0119pu do wczesnych i odpowiednich metod diagnostycznych, a tak\u017ce do dyskusji na temat rozwoju nowych terapii i potencja\u0142u medi\u00f3w spo\u0142eczno\u015bciowych, jak r\u00f3wnie\u017c nowych technologii w tej dziedzinie.<\/p>\n<p>\u201cWci\u0105\u017c wyst\u0119puj\u0105 znaczne op\u00f3\u017anienia w diagnostyce i dost\u0119pie do specjalistycznych metod leczenia pacjent\u00f3w z chorobami rzadkimi. W wielu przypadkach od wyst\u0105pienia pierwszych objaw\u00f3w do postawienia trafnej diagnozy mija ponad 10 lat. Mo\u017ce to prowadzi\u0107 do nieodwracalnych uszkodze\u0144 i powik\u0142a\u0144\u201d \u2013 powiedzia\u0142 prof. dr Atul Mehta, kierownik Oddzia\u0142u Hematologii w Royal Free Hospital w Londynie. \u201cJednym z wa\u017cnych sposob\u00f3w na skr\u00f3cenie drogi diagnostycznej jest rozszerzenie bada\u0144 przesiewowych noworodk\u00f3w i w\u0142\u0105czenie do nich chor\u00f3b rzadkich, w szczeg\u00f3lno\u015bci tych, na kt\u00f3re leczenie jest ju\u017c dost\u0119pne. Jako narz\u0119dzie diagnostyczne pierwszego rzutu, badania przesiewowe noworodk\u00f3w stanowi\u0105 wyj\u0105tkow\u0105 i niezwykle cenn\u0105 okazj\u0119 do dzia\u0142ania w najlepszym interesie naszych pacjent\u00f3w\u201d \u2013 doda\u0142 dr Juan In\u00e9s Navarrete, kierownik Oddzia\u0142u Genetyki w Szpitalu Centralnym del Sur de Alta Especialidad w Meksyku.<\/p>\n<p>Przedstawiciele stowarzysze\u0144 pacjent\u00f3w z Meksyku, Brazylii, Peru, Ekwadoru i Hiszpanii, a tak\u017ce eksperci medyczni oraz przedstawiciele przemys\u0142u biotechnologicznego i farmaceutycznego, uczestniczyli w o\u017cywionej i owocnej wymianie pogl\u0105d\u00f3w na temat szeregu niezwykle istotnych zagadnie\u0144. \u201cNiewielka liczba pacjent\u00f3w z rzadkimi chorobami, u kt\u00f3rych potwierdzono diagnoz\u0119, oraz ich rozproszenie geograficzne stanowi\u0105 powa\u017cne przeszkody dla bada\u0144 klinicznych. Stowarzyszenia pacjent\u00f3w mog\u0105 odegra\u0107 istotn\u0105 rol\u0119 w pokonywaniu tych przeszk\u00f3d, anga\u017cuj\u0105c si\u0119 w tworzenie krajowych rejestr\u00f3w pacjent\u00f3w i u\u0142atwiaj\u0105c wsp\u00f3\u0142prac\u0119 z badaczami i przemys\u0142em farmaceutycznym w zakresie bada\u0144 klinicznych i rozwoju terapii\u201d \u2013 podkre\u015bli\u0142a Karla Luis de Castilla, dyrektor organizacji pacjent\u00f3w ESPERANTRA w Peru.<\/p>\n<p>Om\u00f3wiono r\u00f3wnie\u017c rol\u0119 medi\u00f3w spo\u0142eczno\u015bciowych i nowych technologii w poprawie opieki zdrowotnej i jako\u015bci \u017cycia tych pacjent\u00f3w, w tym telemedycyny i korzystania z aplikacji na telefony kom\u00f3rkowe. \u201cKorzystanie z aplikacji na telefony kom\u00f3rkowe przez pacjent\u00f3w stanowi istotne wzmocnienie w kompleksowym leczeniu wielu chor\u00f3b rzadkich. Pacjenci mog\u0105 zarz\u0105dza\u0107 swoimi wizytami, dostarcza\u0107 dane dotycz\u0105ce jako\u015bci \u017cycia, monitorowa\u0107 w\u0142asne post\u0119py kliniczne \u2013 wszystko to, co jest bardzo pomocne dla lekarza \u2013 komunikacj\u0119 z pacjentem\u201d \u2013 podkre\u015bli\u0142 dr Jordi P\u00e9rez L\u00f3pez, specjalista chor\u00f3b rzadkich i kierownik Dzia\u0142u \u0141\u0105czno\u015bci z Pacjentami i Doradztwa w CENTOGENE.<\/p>\n<p>\u201cWydarzenie to naprawd\u0119 podkre\u015bli\u0142o rol\u0119 stowarzysze\u0144 pacjent\u00f3w w poprawie opieki nad pacjentami z chorobami rzadkimi. Jednocze\u015bnie pokaza\u0142o nam, jak wiele jeszcze pozostaje do zrobienia. Pacjenci, lekarze, naukowcy, prawodawcy i przemys\u0142 farmaceutyczny musz\u0105 zjednoczy\u0107 swoje wysi\u0142ki, aby osi\u0105gn\u0105\u0107 jak najlepsze rezultaty\u201d \u2013 podsumowa\u0142 dr Jesus Navarro, prezes OMER.<\/p>\n<p>Wydarzenie w Meksyku zako\u0144czy\u0142o og\u00f3lno\u015bwiatow\u0105 inicjatyw\u0119 CENTOGENE z okazji Dnia Chor\u00f3b Rzadkich 2020, kt\u00f3ra rozpocz\u0119\u0142a si\u0119 w Lahaur w Pakistanie, nast\u0119pnie przenios\u0142a si\u0119 do Berlina w Niemczech, a zako\u0144czy\u0142a w Ameryce \u0141aci\u0144skiej.<\/p>\n<p>Wi\u0119cej informacji mo\u017cna <a href=\"http:\/\/www.rdd2020.eu\" target=\"_blank\" title=\"Wi\u0119cej informacji\">mo\u017cna znale\u017a\u0107 w Internecie.<\/a><\/p>\n<h5>Kontakt dla medi\u00f3w:<\/h5>\n<p>CENTOGENE<br \/> <a href=\"mailto:press@centogene.com\" title=\"Napisz e-mail\">press(at)centogene(dot)com<\/a><\/p>\n<p>ALIBER<br \/> <a href=\"mailto:aliber@aliber.org\" target=\"_blank\" title=\"Napisz e-mail\">aliber(at)aliber(kropka)org<\/a><\/p>\n<p>OMER<br \/> <a href=\"mailto:omer.proyectos@gmail.com\" title=\"Napisz e-mail\">omer.proyectos(at)gmail(dot)com<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>On the occasion of International Rare Disease Day on February 29th, the Iberoamerican Alliance for Rare, Orphan, and Infectious Diseases [&hellip;]<\/p>\n","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-2365","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>CENTOGENE, OMER, and ALIBER\u2019s Rare Disease Day Event in Mexico City 2020: Inspiring Insights on Patient 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