{"id":2317,"date":"2018-10-29T13:58:32","date_gmt":"2018-10-29T18:58:32","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2317"},"modified":"2018-10-29T13:58:32","modified_gmt":"2018-10-29T18:58:32","slug":"organization-lgmd2i-research-fund","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/lgmd2i\/2018\/10\/29\/organization-lgmd2i-research-fund\/","title":{"rendered":"ORGANIZACJA: Fundusz Badawczy LGMD2i"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27960%27%20height%3D%27720%27%20viewBox%3D%270%200%20960%20720%27%3E%3Crect%20width%3D%27960%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/10\/LGMD2i-Research-Fund.png\" alt=\"\" class=\"lazyload wp-image-2316\"\/><\/figure>\n\n\n<p><strong>NAZWA ORGANIZACJI<\/strong>:         Fundusz Badawczy LGMD2i<\/p>\n<p><strong>STRONA INTERNETOWA:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <u><a href=\"http:\/\/www.lgmd2ifund.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">http:\/\/www.lgmd2ifund.org\/<\/a><\/u><\/p>\n<p><strong>FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> <a href=\"https:\/\/www.facebook.com\/jeanpierre.laurent.58173\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.facebook.com\/jeanpierre.laurent.58173<\/a><\/p>\n<p><strong>NA JAKIM PODTYPIE LGMD KONCENTRUJE SI\u0118 TWOJA ORGANIZACJA:\u00a0 <\/strong><\/p>\n<p>Skupiamy si\u0119 wy\u0142\u0105cznie na LGMD2I<\/p>\n<p><strong>JE\u015aLI KONCENTRUJESZ SI\u0118 NA PODTYPIE, CZY ISTNIEJE REJESTR I W JAKI SPOS\u00d3B PACJENCI MOG\u0104 DO NIEGO DO\u0141\u0104CZY\u0106? <\/strong><\/p>\n<p>Znamy jeden rejestr: Global FKRP Registry (https:\/\/www.fkrp-registry.org\/). Chocia\u017c ma on siedzib\u0119 w Wielkiej Brytanii, jest to rejestr mi\u0119dzynarodowy, dostosowany do charakteru chor\u00f3b rzadkich. LGMD2I jest bardzo rzadk\u0105 chorob\u0105, co oznacza, \u017ce liczba os\u00f3b ni\u0105 dotkni\u0119tych jest niewielka z punktu widzenia tw\u00f3rc\u00f3w lek\u00f3w. Poniewa\u017c zaawansowane badania kliniczne wymagaj\u0105 du\u017cej liczby uczestnik\u00f3w, posiadanie globalnego rejestru pomo\u017ce zidentyfikowa\u0107 znaczn\u0105 liczb\u0119 potencjalnych uczestnik\u00f3w i zwi\u0119kszy szans\u0119 na pomy\u015bln\u0105 rekrutacj\u0119 do bardzo potrzebnych bada\u0144. Od wielu lat wspieramy finansowo ten rejestr i staje si\u0119 on wielkim atutem dla spo\u0142eczno\u015bci LGMD2I.<\/p>\n<p><strong>Czy Twoja organizacja jest organizacj\u0105 non-profit? Je\u015bli tak, to jakiego typu:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Tak, jeste\u015bmy prywatn\u0105 fundacj\u0105 non-profit.<\/p>\n<p><strong>CO ZAINSPIROWA\u0141O POWSTANIE TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n<p>Osoby z LGMD2I mia\u0142y wp\u0142yw na okre\u015blenie naszego celu i misji.<\/p>\n<p><strong>jaka jest misja twojej organizacji?<\/strong><\/p>\n<p>Znalezienie lekarstwa i pomoc osobom cierpi\u0105cym na 2I w utrzymaniu jako\u015bci \u017cycia.<\/p>\n<p><strong>JAKIE US\u0141UGI \u015aWIADCZY TWOJA ORGANIZACJA:<\/strong><\/p>\n<p>Nie \u015bwiadczymy us\u0142ug. Finansujemy badania i pomagamy ludziom uzyska\u0107 informacje na temat choroby i opieki medycznej.<\/p>\n<p><strong>Z CZEGO TWOJA ORGANIZACJA JEST NAJBARDZIEJ DUMNA?<\/strong><\/p>\n<p>Sfinansowali\u015bmy rozpocz\u0119cie program\u00f3w we wszystkich g\u0142\u00f3wnych obszarach terapii (terapia genowa, kom\u00f3rki macierzyste, ...), diagnostyki i narz\u0119dzi badawczych (model myszy, rejestr, ...). Dzi\u0119ki naszemu zaanga\u017cowaniu liczba badaczy w LGMD2I stale ro\u015bnie we wszystkich regionach \u015bwiata. Wa\u017cne by\u0142o stworzenie pewnej masy krytycznej grup badawczych; teraz wa\u017cne jest, aby j\u0105 utrzyma\u0107...<\/p>\n<p><strong>Co chcesz, aby \u015bwiat dowiedzia\u0142 si\u0119 o TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n<p>Finansujemy wszelkie projekty badawcze LGMD2I, kt\u00f3re mog\u0105 przybli\u017cy\u0107 nas do wyleczenia i wspieramy diagnostyk\u0119 na du\u017c\u0105 skal\u0119. Wierzymy, \u017ce odpowiedni\u0105 terapi\u0105\/leczeniem 2I b\u0119dzie po\u0142\u0105czenie metod, kt\u00f3re naprawi\u0105 wadliwy gen i pomog\u0105 odwr\u00f3ci\u0107 uszkodzenia mi\u0119\u015bni. Ka\u017cde laboratorium, kt\u00f3re posiada wiedz\u0119 badawcz\u0105 i technologie, kt\u00f3re mo\u017cna zastosowa\u0107 do opracowania leczenia LGMD2I, powinno si\u0119 z nami skontaktowa\u0107.<\/p>\n<p><strong>W JAKI SPOS\u00d3B LUDZIE MOG\u0104 ZAANGA\u017bOWA\u0106 SI\u0118 WE WSPIERANIE ORGANIZACJI:<\/strong><\/p>\n<p>Ka\u017cdy, kto posiada informacje na temat choroby lub jest zainteresowany znalezieniem lekarstwa, mo\u017ce si\u0119 z nami skontaktowa\u0107.<\/p>\n<p><strong>JAKI JEST NAJLEPSZY SPOS\u00d3B KONTAKTU Z ORGANIZACJ\u0104:<\/strong><\/p>\n<p>Aby uzyska\u0107 wi\u0119cej informacji, prosimy o kontakt:  Dr. Jean-Pierre Laurent, Program Officer poprzez e-mail: <a href=\"mailto:jpl@lgmd2ifund.org\" target=\"_blank\" rel=\"noopener noreferrer\">jpl@lgmd2ifund.org<\/a><\/p>\n<p><strong>\u00a0<\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0LGMD2i Research Fund WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 http:\/\/www.lgmd2ifund.org\/ [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2316,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,35,95],"tags":[],"class_list":["post-2317","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2i","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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