{"id":32537,"date":"2025-02-17T17:03:30","date_gmt":"2025-02-17T16:03:30","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=32537"},"modified":"2025-02-17T17:06:48","modified_gmt":"2025-02-17T16:06:48","slug":"ambicje-2025","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/ambicje-2025\/","title":{"rendered":"Nasze ambicje na rok 2025"},"content":{"rendered":"<p class=\"wp-block-paragraph\">W 2024 r. spo\u0142eczno\u015b\u0107 zwi\u0105zana z zespo\u0142em duplikacji MECP2 by\u0142a \u015bwiadkiem niezwyk\u0142ych kamieni milowych w wy\u015bcigu po lekarstwo wraz z rozpocz\u0119ciem nie jednego, ale dw\u00f3ch bada\u0144 klinicznych. Opr\u00f3cz tych wa\u017cnych wydarze\u0144 jeste\u015bmy dumni z post\u0119p\u00f3w, jakie poczynili\u015bmy w zakresie wspierania rodzin. Jako kluczowe przyk\u0142ady naszych wysi\u0142k\u00f3w w 2024 r. chcieliby\u015bmy szczeg\u00f3lnie podkre\u015bli\u0107:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Rozw\u00f3j REMEDS, naszej internetowej platformy rejestracyjno-ankietowej dla zespo\u0142u duplikacji MECP2 w Europie. Ten istotny zas\u00f3b by\u0142 przedmiotem intensywnych prac w 2024 r. i ma zosta\u0107 uruchomiony w po\u0142owie 2025 r., toruj\u0105c drog\u0119 do lepszego gromadzenia danych i zrozumienia zespo\u0142u.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Przygotowanie dw\u00f3ch webinari\u00f3w i e-booka, kt\u00f3re pomog\u0105 rodzinom lepiej zrozumie\u0107 badanie ATTUNE i jego implikacje.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Liczne wydarzenia charytatywne w Austrii maj\u0105ce na celu podnoszenie \u015bwiadomo\u015bci na temat zespo\u0142u duplikacji MECP2.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Zatwierdzenie przez austriackie Ministerstwo Finans\u00f3w, dzi\u0119ki kt\u00f3remu darowizny przekazane nam od 1 stycznia 2024 r. b\u0119d\u0105 mog\u0142y zosta\u0107 odliczone od podatku.&nbsp;<\/li>\n<\/ul>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Rok 2024 by\u0142 bardzo ekscytuj\u0105cy dla naszej spo\u0142eczno\u015bci i organizacji. Zdajemy sobie jednak spraw\u0119, \u017ce nasza podr\u00f3\u017c jeszcze si\u0119 nie sko\u0144czy\u0142a...&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Wasze wsparcie od czasu naszego powstania latem 2022 roku by\u0142o naprawd\u0119 niesamowite i daje nam pewno\u015b\u0107, \u017ce mo\u017cemy kontynuowa\u0107. Dzi\u0119ki Wam nadal wspieramy, finansujemy badania i zapewniamy wsparcie rodzinom zmagaj\u0105cym si\u0119 z zespo\u0142em duplikacji MECP2.&nbsp;<\/p>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Wybiegaj\u0105c w przysz\u0142o\u015b\u0107 do 2025 r., zobowi\u0105zujemy si\u0119 do:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Po\u0142\u0105czenie bada\u0144 akademickich i firm farmaceutycznych w celu przyspieszenia rozwoju terapii i ulepszenia narz\u0119dzi diagnostycznych.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Wspieranie wdra\u017cania znacz\u0105cych bada\u0144 klinicznych, na przyk\u0142ad poprzez wsp\u00f3\u0142prac\u0119 z firmami farmaceutycznymi i organami ds. zdrowia, takimi jak FDA lub EMA.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Zapewnienie wsparcia finansowego rodzinom, aby pom\u00f3c im uzyska\u0107 dost\u0119p do niezb\u0119dnych urz\u0105dze\u0144 medycznych i terapii dostosowanych do ich unikalnych potrzeb.&nbsp;<\/li>\n<\/ul>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Nasza praca nie by\u0142aby mo\u017cliwa bez ci\u0105g\u0142ego wsparcia. Dzi\u0119kujemy za bycie cz\u0119\u015bci\u0105 naszej podr\u00f3\u017cy.&nbsp;<\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>In 2024, the MECP2 Duplication Syndrome community has witnessed remarkable milestones in the race for a cure with the launch of not one, but two clinical trials. In addition to [&hellip;]<\/p>","protected":false},"author":1,"featured_media":32676,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[217],"tags":[],"class_list":["post-32537","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-dupmecp2"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Our ambitions for 2025 - DupMECP2<\/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:\/\/dupmecp2.eu\/pl\/ambicje-2025\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Our ambitions for 2025 - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"In 2024, the MECP2 Duplication Syndrome community has witnessed remarkable milestones in the race for a cure with the launch of not one, but two clinical trials. 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