{"id":2367,"date":"2020-03-17T00:00:00","date_gmt":"2020-03-17T00:00:00","guid":{"rendered":"http:\/\/centogene.vl22350.dinaserver.com\/2367"},"modified":"2020-03-17T00:00:00","modified_gmt":"2020-03-17T00:00:00","slug":"stowarzyszenia-zajmujace-sie-chorobami-rzadkimi-walcza-o-lepsza-opieke-zdrowotna-dla-pacjentow","status":"publish","type":"post","link":"https:\/\/www.centogene.com\/pl\/rare-disease-associations-fight-for-better-patient-health-care\/","title":{"rendered":"Stowarzyszenia chor\u00f3b rzadkich walcz\u0105 o lepsz\u0105 opiek\u0119 zdrowotn\u0105 dla pacjent\u00f3w"},"content":{"rendered":"<ul>\n<li>\n<ul>\n<li>W sobot\u0119 29 lutego CENTOGENE, OMER i ALIBER b\u0119d\u0105 \u015bwi\u0119towa\u0107 Mi\u0119dzynarodowy Dzie\u0144 Chor\u00f3b Rzadkich, organizuj\u0105c wydarzenie dla pacjent\u00f3w, pracownik\u00f3w s\u0142u\u017cby zdrowia i obro\u0144c\u00f3w praw, aby zwr\u00f3ci\u0107 uwag\u0119 na choroby rzadkie.<\/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, 28 lutego 2020 r.: Ponad 300 uczestnik\u00f3w spotka si\u0119 29 lutego 2020 r. w hotelu Marriott Reforma w Meksyku, aby podnie\u015b\u0107 \u015bwiadomo\u015b\u0107 i zbudowa\u0107 spo\u0142eczno\u015b\u0107 dla wszystkich os\u00f3b dotkni\u0119tych chorobami rzadkimi. Pacjenci, ich rodziny, stowarzyszenia pacjent\u00f3w, naukowcy i specjali\u015bci medyczni podziel\u0105 si\u0119 swoimi do\u015bwiadczeniami i om\u00f3wi\u0105 najnowsze badania, mo\u017cliwo\u015bci diagnostyczne, metody leczenia i obszary wsp\u00f3\u0142pracy.<\/p>\n<p>\u201cNie spos\u00f3b przeceni\u0107 znaczenia stowarzysze\u0144 pacjent\u00f3w z chorobami rzadkimi. Nie tylko wk\u0142adaj\u0105 one cenne wysi\u0142ki w nag\u0142o\u015bnienie tych chor\u00f3b i problem\u00f3w os\u00f3b nimi dotkni\u0119tych, ale tak\u017ce aktywnie uczestnicz\u0105 w tworzeniu rejestr\u00f3w pacjent\u00f3w oraz inicjowaniu wsp\u00f3\u0142pracy w zakresie bada\u0144 i rozwoju terapii\u201d \u2013 m\u00f3wi dr Jordi P\u00e9rez L\u00f3pez, specjalista ds. chor\u00f3b rzadkich i kierownik dzia\u0142u doradztwa i kontakt\u00f3w z pacjentami w CENTOGENE.<\/p>\n<p>Jednym z najwa\u017cniejszych zada\u0144 organizacji pacjenckich jest informowanie i szkolenie lekarzy podstawowej opieki zdrowotnej, aby nauczyli si\u0119 rozpoznawa\u0107 r\u00f3\u017cne schorzenia zwi\u0105zane z tymi chorobami. Wielu pacjent\u00f3w to dzieci, a dla ich rozwoju kluczowe jest uzyskanie trafnej diagnozy we wczesnym wieku. Obecnie wielu z nich otrzymuje precyzyjn\u0105 diagnoz\u0119 zazwyczaj w wieku 10\u201315 lat.<\/p>\n<p>W Meksyku pierwszym krokiem w diagnozowaniu rzadkiej choroby jest badanie przesiewowe noworodk\u00f3w, kt\u00f3re zgodnie z prawem jest obowi\u0105zkowe dla wszystkich noworodk\u00f3w w tym kraju. Obecnie organizacje pacjent\u00f3w i wielu lekarzy lobbuje za w\u0142\u0105czeniem do bada\u0144 przesiewowych r\u00f3wnie\u017c bardziej uleczalnych zaburze\u0144 metabolicznych, aby zapewni\u0107 diagnoz\u0119 jak najwcze\u015bniej i umo\u017cliwi\u0107 szybkie, ratuj\u0105ce \u017cycie leczenie.<\/p>\n<p>\u201cGrupo Fabry dok\u0142ada wszelkich stara\u0144, aby zapewni\u0107 pacjentom dost\u0119p do leczenia pierwszego rzutu\u201d \u2013 m\u00f3wi Alejandra Zamora, krajowa koordynatorka Programu Pacjenta Grupo Fabry de Mexico. \u201cNaszym g\u0142\u00f3wnym wyzwaniem jest zapewnienie pacjentom tego, do czego powinni mie\u0107 prawo: wczesnej diagnozy i odpowiedniego leczenia. Jednocze\u015bnie staramy si\u0119 wspiera\u0107 lekarzy w uzyskiwaniu informacji niezb\u0119dnych do leczenia pacjent\u00f3w zgodnie z mi\u0119dzynarodowymi wytycznymi medycznymi\u201d.\u201d<\/p>\n<p>Meksyka\u0144ska Organizacja Chor\u00f3b Rzadkich (OMER) zosta\u0142a za\u0142o\u017cona w 2010 roku jako organizacja parasolowa dla meksyka\u0144skich grup samopomocowych zajmuj\u0105cych si\u0119 chorobami rzadkimi, kt\u00f3rej misj\u0105 jest \u0142\u0105czenie wszystkich tych stowarzysze\u0144. OMER stara si\u0119 da\u0107 g\u0142os pacjentom z chorobami rzadkimi i wspiera\u0107 ich w d\u0105\u017ceniu do jak najlepszej jako\u015bci \u017cycia i odpowiedniej opieki medycznej. Oznacza to wsp\u00f3\u0142prac\u0119 w\u0142adz lokalnych i federalnych, a tak\u017ce wszystkich podmiot\u00f3w zaanga\u017cowanych w struktury zdrowia publicznego. Obecnie OMER zrzesza 30 stowarzysze\u0144 pacjent\u00f3w, w tym MPS Jajax AC i Grupo Fabry de Mexico.<\/p>\n<p>\u201cMusimy d\u0105\u017cy\u0107 do stworzenia jednego frontu, na kt\u00f3rym b\u0119dziemy mogli wsp\u00f3lnie zabiega\u0107 o lepsz\u0105 jako\u015b\u0107 us\u0142ug medycznych, dost\u0119p do diagnostyki i terapii, aby znacz\u0105co poprawi\u0107 jako\u015b\u0107 \u017cycia pacjent\u00f3w. To zawsze by\u0142 nasz cel\u2019 \u2013 m\u00f3wi dr Jesus Navarro, prezes OMER. \u201dZapraszam Pa\u0144stwa do przy\u0142\u0105czenia si\u0119 do nas w tym wysi\u0142ku, aby da\u0107 g\u0142os pacjentom z chorobami rzadkimi i ich rodzinom w Meksyku, broni\u0107, chroni\u0107 i promowa\u0107 ich prawa oraz by\u0107 \u017ar\u00f3d\u0142em informacji, doradzaj\u0105c, informuj\u0105c i wspieraj\u0105c pacjent\u00f3w, grupy i stowarzyszenia \u2013 pomagaj\u0105c im w zapobieganiu i leczeniu chor\u00f3b rzadkich\u201c.\u201d<\/p>\n<p>Wi\u0119cej informacji mo\u017cna znale\u017a\u0107 w Internecie.<\/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\" 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><br \/> &nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>On Saturday, February 29th, CENTOGENE, OMER, and ALIBER will celebrate International Rare Disease Day with an event for patients, healthcare [&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-2367","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>Rare Disease Associations Fight for Better Patient Health Care | CENTOGENE<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link 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