{"id":2615,"date":"2019-01-27T15:17:42","date_gmt":"2019-01-27T21:17:42","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2615"},"modified":"2019-01-27T15:17:42","modified_gmt":"2019-01-27T21:17:42","slug":"conquistando-escalones","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/organization-interview\/2019\/01\/27\/conquistando-escalones\/","title":{"rendered":"ORGANIZACJA: Conquistando Escalones"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

NAZWA ORGANIZACJI<\/strong>: CONQUISTANDO ESCALONES<\/p>\n\n\n\n

STRONA INTERNETOWA:<\/strong>              www.conquistandoescalones.org<\/a><\/p>\n\n\n\n

FACEBOOK:        <\/strong> www.facebook.com\/conquistandoescalones<\/a><\/p>\n\n\n\n

TWITTER:             <\/strong>@AceDistrofia<\/a><\/p>\n\n\n\n

NA JAKIM PODTYPIE LGMD KONCENTRUJE SI\u0118 TWOJA ORGANIZACJA:  <\/strong> <\/p>\n\n\n\n

Skupiamy si\u0119 na dystrofii mi\u0119\u015bniowej obr\u0119czy ko\u0144czyny typu 1F (LGMD1F).  <\/strong><\/p>\n\n\n\n

JE\u015aLI KONCENTRUJESZ SI\u0118 NA PODTYPIE, CZY\nCZY ISTNIEJE REJESTR I JAK PACJENCI MOG\u0104 DO NIEGO DO\u0141\u0104CZY\u0106? <\/strong><\/p>\n\n\n\n

Tak, utworzyli\u015bmy rejestr pacjent\u00f3w i pacjenci mog\u0105 si\u0119 z nami kontaktowa\u0107. my<\/g> wysy\u0142aj\u0105c wiadomo\u015b\u0107 e-mail na adres conquistandoescalones@gmail.com<\/a> <\/p>\n\n\n\n

CZY ORGANIZACJA JEST ORGANIZACJ\u0104 NON-PROFIT? JE\u015aLI TAK, TO JAKIEGO TYPU:         <\/strong><\/p>\n\n\n\n

Tak, jeste\u015bmy zarejestrowani w\nHiszpanii i we W\u0142oszech. <\/p>\n\n\n\n

CO ZAINSPIROWA\u0141O\nDO STWORZENIA ORGANIZACJI<\/strong>:<\/p>\n\n\n\n

Stowarzyszenie zosta\u0142o\nzosta\u0142o utworzone z powodu konieczno\u015bci rozpowszechniania informacji o naszej chorobie i\nznalezienia funduszy niezb\u0119dnych do prowadzenia bada\u0144.\nZosta\u0142o za\u0142o\u017cone przez osoby dotkni\u0119te dystrofi\u0105 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych\n1F (LGMD-1F) w 2015 roku, poniewa\u017c w tym roku odkryto, \u017ce mutacja w genie\nmutacja w genie powoduj\u0105cym LGMD1F sprawia, \u017ce osoby dotkni\u0119te chorob\u0105 s\u0105 odporne na AIDS i\nczyni ich bram\u0105 wej\u015bciow\u0105 do mo\u017cliwego wyleczenia tej globalnej pandemii.<\/p>\n\n\n\n

JAKA JEST MISJA ORGANIZACJI:<\/strong><\/p>\n\n\n\n

Nasz\u0105 misj\u0105 jest podnoszenie \u015bwiadomo\u015bci na temat chor\u00f3b rzadkich i znaczenia ich badania. Tworzymy r\u00f3wnie\u017c baz\u0119 danych pacjent\u00f3w z LGMD1F na potrzeby finansowanych przez nas bada\u0144 naukowych. Kontaktujemy si\u0119 z laboratoriami badawczymi, kt\u00f3re badaj\u0105 LGMD1F. Nieustannie staramy si\u0119 zbiera\u0107 pieni\u0105dze na finansowanie bada\u0144. Pom\u00f3\u017c nam chodzi\u0107, pom\u00f3\u017c nam \u017cy\u0107! Razem mo\u017cemy to zrobi\u0107. \u00a0<\/p>\n\n\n\n

JAKIE US\u0141UGI \u015aWIADCZY\n\u015aWIADCZY TWOJA ORGANIZACJA:<\/strong><\/p>\n\n\n\n

Zapewniamy wsparcie\npacjent\u00f3w z LGMD1F i innymi podtypami LGMD oraz prowadzimy Rejestr Pacjent\u00f3w LGMD1F.\nRejestr. Ponadto jeste\u015bmy w sta\u0142ym\nw sta\u0142ym kontakcie z laboratoriami badawczymi. <\/p>\n\n\n\n

Koncentrujemy si\u0119 przede wszystkim\nna badaniach i rozwoju metod leczenia, a nie na us\u0142ugach dla pacjent\u00f3w.  <\/p>\n\n\n\n

Z CZEGO TWOJA\nZ CZEGO ORGANIZACJA JEST NAJBARDZIEJ DUMNA:<\/strong><\/p>\n\n\n\n

 W ci\u0105gu 3 lat byli\u015bmy w stanie sfinansowa\u0107 nowe\nbadania nad LGMD1F, kt\u00f3re wcze\u015bniej zosta\u0142y wstrzymane. <\/strong><\/p>\n\n\n\n

CO CHCESZ, ABY \u015aWIAT DOWIEDZIA\u0141 SI\u0118 O TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n\n\n\n

Finansujemy wiele r\u00f3\u017cnych\npodej\u015b\u0107, w tym CRISPR i repurposing lek\u00f3w ju\u017c dost\u0119pnych na rynku dla innych chor\u00f3b.\ninnych chor\u00f3b. <\/p>\n\n\n\n

W JAKI SPOS\u00d3B LUDZIE MOG\u0104\nZAANGA\u017bOWA\u0106 SI\u0118 WE WSPIERANIE ORGANIZACJI:<\/strong><\/p>\n\n\n\n

Ludzie mog\u0105 nam pom\u00f3c\nnam zebra\u0107 pieni\u0105dze na badania, organizuj\u0105c wydarzenia, przekazuj\u0105c darowizn\u0119 lub w inny spos\u00f3b\ninny spos\u00f3b (patrz link do naszej strony internetowej\nhttp:\/\/www.conquistandoescalones.org\/web\/en\/how-to-help-us\/)<\/p>\n\n\n\n

JAKI JEST NAJLEPSZY SPOS\u00d3B\nSKONTAKTOWA\u0106 SI\u0118 Z ORGANIZACJ\u0104:<\/strong><\/p>\n\n\n\n

Mo\u017cna si\u0119 z nami skontaktowa\u0107 pod adresem\nconquistandoescalones@gmail.com lub wys\u0142a\u0107 nam wiadomo\u015b\u0107 za po\u015brednictwem Facebooka.\n<\/p>\n\n\n\n

CZY JEST CO\u015a JESZCZE, CO CHCIA\u0141BY\u015a DODA\u0106?<\/strong><\/p>\n\n\n\n

\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nJe\u015bli masz diagnoz\u0119 LGMD1F, skontaktuj si\u0119 z nami!!!\n\n\n\n<\/p>","protected":false},"excerpt":{"rendered":"

NAME OF ORGANIZATION:          CONQUISTANDO ESCALONES WEBSITE:              www.conquistandoescalones.org FACEBOOK:        […]<\/p>","protected":false},"author":1,"featured_media":2614,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,101,95],"tags":[],"class_list":["post-2615","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd1f","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: Conquistando Escalones - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/pl\/organization-interview\/2019\/01\/27\/conquistando-escalones\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Conquistando Escalones - 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