{"id":33604,"date":"2026-07-28T14:50:43","date_gmt":"2026-07-28T12:50:43","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=33604"},"modified":"2026-07-31T14:53:47","modified_gmt":"2026-07-31T12:53:47","slug":"nowy-rozdzial-mdg","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/nowy-rozdzial-mdg\/","title":{"rendered":"Nowy rozdzia\u0142 dla spo\u0142eczno\u015bci os\u00f3b dotkni\u0119tych zespo\u0142em duplikacji genu MECP2: poznaj MDG"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Dzisiaj z dum\u0105 przedstawiamy Pa\u0144stwu projekt, nad kt\u00f3rym pracujemy ju\u017c od kilku miesi\u0119cy.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Program MECP2 Duplication Global (MDG) zosta\u0142 oficjalnie uruchomiony.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph translation-block\">Przez ca\u0142y lipiec, z okazji Miesi\u0105ca \u015awiadomo\u015bci Zespo\u0142u Duplikacji Genu MECP2, g\u0142osy z ca\u0142ego \u015bwiata zjednoczy\u0142y si\u0119 wok\u00f3\u0142 prostego przes\u0142ania: <strong>\u201eJeste\u015bmy MDG.\u201d<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">DupMECP2 z dum\u0105 do\u0142\u0105cza do grona cz\u0142onk\u00f3w-za\u0142o\u017cycieli MECP2 Duplication Global (MDG) \u2013 nowego mi\u0119dzynarodowego stowarzyszenia zrzeszaj\u0105cego organizacje dzia\u0142aj\u0105ce na rzecz os\u00f3b cierpi\u0105cych na zesp\u00f3\u0142 duplikacji genu MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Dzisiaj ta wizja staje si\u0119 rzeczywisto\u015bci\u0105.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Dlaczego MDG?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Zesp\u00f3\u0142 duplikacji genu MECP2 to choroba dotykaj\u0105ca rodziny na ca\u0142ym \u015bwiecie. Niezale\u017cnie od kraju, w kt\u00f3rym mieszkaj\u0105, rodziny borykaj\u0105 si\u0119 z podobnymi wyzwaniami: zaspokajaniem z\u0142o\u017conych potrzeb medycznych, poszukiwaniem wiarygodnych informacji, walk\u0105 o dost\u0119p do odpowiedniej opieki oraz podtrzymywaniem nadziei na przysz\u0142e metody leczenia.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Od wielu lat organizacje pacjent\u00f3w na ca\u0142ym \u015bwiecie nieustannie dzia\u0142aj\u0105 na rzecz wspierania rodzin, podnoszenia \u015bwiadomo\u015bci spo\u0142ecznej oraz przyspieszenia bada\u0144 naukowych. Ka\u017cda z tych organizacji ma swoj\u0105 w\u0142asn\u0105 histori\u0119, spo\u0142eczno\u015b\u0107 i mocne strony, ale wszystkie maj\u0105 ten sam cel: popraw\u0119 jako\u015bci \u017cycia os\u00f3b cierpi\u0105cych na zesp\u00f3\u0142 duplikacji genu MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">MDG powsta\u0142o z przekonania, \u017ce razem mo\u017cemy osi\u0105gn\u0105\u0107 wi\u0119cej ni\u017c dzia\u0142aj\u0105c osobno.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Jak pokazali\u015bmy w trakcie ca\u0142ej lipcowej kampanii, nasza spo\u0142eczno\u015b\u0107 wykracza poza oceany, j\u0119zyki i granice. Dzi\u0119ki wsp\u00f3lnej pracy nasz zbiorowy g\u0142os staje si\u0119 silniejszy.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Czym jest globalna duplikacja genu MECP2?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">MECP2 Duplication Global (MDG) to sojusz organizacji non-profit zaanga\u017cowanych w pomoc osobom dotkni\u0119tym zespo\u0142em duplikacji genu MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u0141\u0105cz\u0105c si\u0142y, pragniemy zacie\u015bni\u0107 wsp\u00f3\u0142prac\u0119 mi\u0119dzynarodow\u0105 i skoordynowa\u0107 nasze dzia\u0142ania w zakresie podnoszenia \u015bwiadomo\u015bci, bada\u0144 naukowych, wsparcia dla rodzin oraz opieki klinicznej.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Og\u00f3lnie rzecz bior\u0105c, MDG stawia sobie za cel:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Przyspieszenie rozwoju nowych metod leczenia poprzez wspieranie i koordynowanie dzia\u0142a\u0144 badawczych na skal\u0119 globaln\u0105.<\/li>\n\n\n\n<li>Wspieranie post\u0119p\u00f3w w opiece klinicznej oraz usprawnianie wymiany wiedzy mi\u0119dzy krajami.<\/li>\n\n\n\n<li>Wspieranie rodzin na ca\u0142ym \u015bwiecie poprzez zacie\u015bnianie wsp\u00f3\u0142pracy mi\u0119dzy organizacjami pacjent\u00f3w a zainteresowanymi spo\u0142eczno\u015bciami.<\/li>\n\n\n\n<li>Podnoszenie \u015bwiadomo\u015bci na temat zespo\u0142u duplikacji genu MECP2 na skal\u0119 mi\u0119dzynarodow\u0105.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Dlaczego premiera odb\u0119dzie si\u0119 28 lipca?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Data ta nie zosta\u0142a wybrana przypadkowo.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">MDG zosta\u0142o oficjalnie uruchomione 28 lipca, w nawi\u0105zaniu do regionu chromosomowego Xq28, po\u0142o\u017conego na chromosomie X, w kt\u00f3rym zazwyczaj znajduje si\u0119 gen MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Dla spo\u0142eczno\u015bci zjednoczonej wok\u00f3\u0142 tej samej diagnozy genetycznej data ta symbolizuje zar\u00f3wno nasze wsp\u00f3lne pochodzenie, jak i nasz\u0105 wsp\u00f3ln\u0105 przysz\u0142o\u015b\u0107.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Co to oznacza dla rodzin<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Dla rodzin dotkni\u0119tych zespo\u0142em duplikacji genu MECP2 skr\u00f3t MDG oznacza co\u015b prostego, ale o ogromnym znaczeniu: <strong>razem jeste\u015bmy silniejsi.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Niezale\u017cnie od tego, czy mieszkasz w Europie, Ameryce P\u00f3\u0142nocnej, Azji czy gdzie indziej, jeste\u015b cz\u0119\u015bci\u0105 szybko rozwijaj\u0105cej si\u0119 mi\u0119dzynarodowej spo\u0142eczno\u015bci, kt\u00f3ra wsp\u00f3lnie d\u0105\u017cy do tych samych cel\u00f3w.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Przez ca\u0142y lipcowy okres kampanii wci\u0105\u017c powraca\u0142 ten sam przekaz: ka\u017cda rodzina ma swoj\u0105 histori\u0119, ale razem nasze g\u0142osy tworz\u0105 jeden.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">MDG opiera si\u0119 na tej idei.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u0141\u0105cz\u0105c si\u0142y r\u00f3\u017cnych organizacji, mo\u017cemy dzieli\u0107 si\u0119 naszymi zasobami, uczy\u0107 si\u0119 od siebie nawzajem, zyskiwa\u0107 wi\u0119kszy zasi\u0119g naszych dzia\u0142a\u0144 u\u015bwiadamiaj\u0105cych oraz zapewni\u0107 rodzinom dost\u0119p do silniejszej i lepiej po\u0142\u0105czonej sieci o zasi\u0119gu globalnym.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>A co teraz?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Uruchomienie MDG nie oznacza ko\u0144ca drogi. Oznacza ono pocz\u0105tek nowego rozdzia\u0142u.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Wci\u0105\u017c pozostaje wiele do zrobienia. Nale\u017cy kontynuowa\u0107 badania. Nale\u017cy poprawi\u0107 dost\u0119p do opieki zdrowotnej. Rodziny potrzebuj\u0105 wsparcia, informacji i nadziei.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Post\u0119p rodzi si\u0119 jednak wtedy, gdy ludzie si\u0119 jednocz\u0105. <strong>Bo kiedy \u0142\u0105czymy nasze g\u0142osy, stajemy si\u0119 silniejsi.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Dowiedz si\u0119 wi\u0119cej<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Odwied\u017a stron\u0119 internetow\u0105 MDG <a href=\"https:\/\/wearemecp2dup.org\/\">www.wearemecp2dupglobal.org<\/a> aby pozna\u0107 inne organizacje wchodz\u0105ce w sk\u0142ad sojuszu, zapozna\u0107 si\u0119 z planowanymi inicjatywami oraz dowiedzie\u0107 si\u0119, w jaki spos\u00f3b mo\u017cna wesprze\u0107 globalne dzia\u0142ania na rzecz os\u00f3b dotkni\u0119tych zespo\u0142em duplikacji genu MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Jeden g\u0142os. Globalny ruch. Jeste\u015bmy MECP2 Duplication Global.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>Aujourd\u2019hui, nous sommes fiers de partager avec vous un projet qui se construit depuis plusieurs mois. MECP2 Duplication Global (MDG) est officiellement lanc\u00e9. Tout au long du mois de juillet, [&hellip;]<\/p>","protected":false},"author":1,"featured_media":33605,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-33604","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualite"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Un nouveau chapitre pour la communaut\u00e9 du syndrome de duplication du g\u00e8ne MECP2 : d\u00e9couvrez MDG - 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\/nowy-rozdzial-mdg\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Un nouveau chapitre pour la communaut\u00e9 du syndrome de duplication du g\u00e8ne MECP2 : d\u00e9couvrez MDG - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Aujourd\u2019hui, nous sommes fiers de partager avec vous un projet qui se construit depuis plusieurs mois. 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