{"id":18368,"date":"2023-08-11T18:03:54","date_gmt":"2023-08-11T18:03:54","guid":{"rendered":"https:\/\/dupmecp2.eu\/feiern-eines-jahres-des-fortschritts-der-weg-und-die-erfolge-des-vereins\/"},"modified":"2023-08-11T19:59:25","modified_gmt":"2023-08-11T19:59:25","slug":"feiern-eines-jahres-des-fortschritts-der-weg-und-die-erfolge-des-vereins","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/el\/feiern-eines-jahres-des-fortschritts-der-weg-und-die-erfolge-des-vereins\/","title":{"rendered":"Feiern eines Jahres des Fortschritts: Der Weg und die Erfolge des Vereins"},"content":{"rendered":"<p>\u03a0\u03c1\u03b9\u03bd \u03b1\u03c0\u03cc \u03c0\u03b5\u03c1\u03af\u03c0\u03bf\u03c5 \u03ad\u03bd\u03b1 \u03c7\u03c1\u03cc\u03bd\u03bf, \u03b4\u03b7\u03bc\u03b9\u03bf\u03c5\u03c1\u03b3\u03ae\u03b8\u03b7\u03ba\u03b5 \u03b7 \u03ad\u03bd\u03c9\u03c3\u03b7 \"Lasst \u03bc\u03b1\u03c2 MDS heilen - DupMECP2\".<\/p>\n\n<p>\u0397 \u03b9\u03c3\u03c4\u03bf\u03c1\u03af\u03b1 \u03c4\u03bf\u03c5 \u03a3\u03c5\u03bb\u03bb\u03cc\u03b3\u03bf\u03c5 \u03be\u03b5\u03ba\u03af\u03bd\u03b7\u03c3\u03b5 \u03bc\u03b5 \u03c4\u03b7 \u03b4\u03b9\u03ac\u03b3\u03bd\u03c9\u03c3\u03b7 \u03c4\u03bf\u03c5 Matteo \u03c4\u03bf 2021. \u039c\u03b5\u03c4\u03ac \u03b1\u03c0\u03cc \u03c4\u03c1\u03af\u03b1 \u03c7\u03c1\u03cc\u03bd\u03b9\u03b1 \u03b4\u03c5\u03c3\u03c4\u03c5\u03c7\u03af\u03b1\u03c2 \u03ba\u03b1\u03b9 \u03b1\u03b3\u03ce\u03bd\u03b1 \u03b1\u03c0\u03cc \u03c4\u03b7\u03bd \u03c0\u03bb\u03b5\u03c5\u03c1\u03ac \u03c4\u03c9\u03bd \u03b3\u03bf\u03bd\u03ad\u03c9\u03bd \u03c4\u03bf\u03c5, David \u03ba\u03b1\u03b9 Caroline Covini, \u03ad\u03b3\u03b9\u03bd\u03b5 \u03c4\u03b5\u03bb\u03b9\u03ba\u03ac \u03b7 \u03b4\u03b9\u03ac\u03b3\u03bd\u03c9\u03c3\u03b7 \u03c4\u03bf\u03c5 MECP2-Duplikationssyndrom \u03ba\u03b1\u03b9 \u03c0\u03b5\u03c1\u03b9\u03b5\u03bb\u03ac\u03bc\u03b2\u03b1\u03bd\u03b5 \u03bc\u03b9\u03b1 \u03c3\u03c0\u03ac\u03bd\u03b9\u03b1 \u03b1\u03c3\u03b8\u03ad\u03bd\u03b5\u03b9\u03b1, \u03b3\u03b9\u03b1 \u03c4\u03b7\u03bd \u03bf\u03c0\u03bf\u03af\u03b1 \u03ad\u03c7\u03bf\u03c5\u03bd \u03ba\u03b1\u03c4\u03b1\u03b3\u03c1\u03b1\u03c6\u03b5\u03af \u03bc\u03cc\u03bd\u03bf 260 \u03c0\u03b5\u03c1\u03b9\u03c0\u03c4\u03ce\u03c3\u03b5\u03b9\u03c2 \u03c0\u03b1\u03b3\u03ba\u03bf\u03c3\u03bc\u03af\u03c9\u03c2.<\/p>\n\n<p>Durch Liebe und die Entschlie\u00dfung, f\u00fcr Kinder mit MDS einen Unterschied zu machen, vereint, begaben sich David und Caroline, beide Wissenschaftler, auf eine au\u00dfergew\u00f6hnliche Reise. Diese Reise f\u00fchrte zur Gr\u00fcndung von \"Lasst uns MDS heilen\", einer Organisation, die sich der Beschleunigung der Forschung, der Bereitstellung von Unterst\u00fctzung und der F\u00f6rderung der Einheit unter den Familien, die mit dieser Herausforderung konfrontiert sind, widmet.<\/p>\n\n<p>Im Mai 2022, als die Covinis \u00fcber den Kampf der Eltern gegen seltene Krankheiten berichten und die Medien auf MDS aufmerksam machen, kreuzen sich die Wege der Familien Susanne &amp; Gerald Molnar und Ana &amp; Boris Curic, die ebenfalls am MECP2-Genduplikationssyndrom erkrankt sind. \u039c\u03b5 \u03b9\u03c3\u03c7\u03c5\u03c1\u03cc \u03ba\u03af\u03bd\u03b7\u03c4\u03c1\u03bf \u03bd\u03b1 \u03c3\u03c5\u03bc\u03b2\u03ac\u03bb\u03bf\u03c5\u03bd \u03c3\u03c4\u03b7\u03bd \u03b1\u03c0\u03bf\u03c3\u03c4\u03bf\u03bb\u03ae \u03c4\u03c9\u03bd \u03b1\u03b3\u03b1\u03c0\u03b7\u03bc\u03ad\u03bd\u03c9\u03bd \u03c4\u03bf\u03c5\u03c2 \u03c0\u03c1\u03bf\u03c3\u03ce\u03c0\u03c9\u03bd, \u03bf\u03b9 \u03b4\u03cd\u03bf \u03b1\u03c5\u03c4\u03ad\u03c2 \u03bf\u03b9\u03ba\u03bf\u03b3\u03ad\u03bd\u03b5\u03b9\u03b5\u03c2 \u03b5\u03bd\u03c4\u03ac\u03c7\u03b8\u03b7\u03ba\u03b1\u03bd \u03c3\u03c4\u03bf \u0394\u03b9\u03bf\u03b9\u03ba\u03b7\u03c4\u03b9\u03ba\u03cc \u03a3\u03c5\u03bc\u03b2\u03bf\u03cd\u03bb\u03b9\u03bf \u03c4\u03bf\u03c5 Vereins \u03ba\u03b1\u03b9 \u03c3\u03c7\u03b7\u03bc\u03ac\u03c4\u03b9\u03c3\u03b1\u03bd \u03bc\u03b9\u03b1 \u03b9\u03c3\u03c7\u03c5\u03c1\u03ae \u03ba\u03b1\u03b9 \u03b1\u03c6\u03bf\u03c3\u03b9\u03c9\u03bc\u03ad\u03bd\u03b7 \u03bf\u03bc\u03ac\u03b4\u03b1.<\/p>\n\n<p>Dies Datum markiert nicht nur die Gr\u00fcndung des Vereins, sondern feiert auch die unglaublichen Fortschritte im Kampf gegen das MECP2-Genduplikationssyndrom. \u039c\u03ad\u03c3\u03b1 \u03c3\u03b5 \u03bc\u03cc\u03bb\u03b9\u03c2 \u03ad\u03bd\u03b1 \u03c7\u03c1\u03cc\u03bd\u03bf, \u03b5\u03c0\u03b9\u03c4\u03b5\u03cd\u03c7\u03b8\u03b7\u03ba\u03b5 \u03bc\u03b9\u03b1 \u03c3\u03b5\u03b9\u03c1\u03ac \u03b1\u03c0\u03cc \u03c3\u03b7\u03bc\u03b1\u03bd\u03c4\u03b9\u03ba\u03ac \u03b5\u03c0\u03b9\u03c4\u03b5\u03cd\u03b3\u03bc\u03b1\u03c4\u03b1:<\/p>\n\n<ul class=\"wp-block-list\">\n<li><strong>\u0399\u03c3\u03c7\u03c5\u03c1\u03ae \u03bf\u03bc\u03ac\u03b4\u03b1 \u03ba\u03b1\u03b9 \u03c0\u03b1\u03b3\u03ba\u03cc\u03c3\u03bc\u03b9\u03b1 \u03c5\u03c0\u03bf\u03c3\u03c4\u03ae\u03c1\u03b9\u03be\u03b7:<\/strong> \u03a4\u03bf Vorstand des Vereins hat zusammengebracht mit wissenschaftlichen Expert, Familienmitgliedern und Freunden \u00fcber 130 Mitglieder aus mehr als 10 L\u00e4ndern. \u039c\u03b1\u03b6\u03af, \u03c3\u03c7\u03b7\u03bc\u03b1\u03c4\u03af\u03b6\u03bf\u03c5\u03bc\u03b5 \u03ad\u03bd\u03b1 \u03c0\u03b1\u03b3\u03ba\u03cc\u03c3\u03bc\u03b9\u03bf \u03b4\u03af\u03ba\u03c4\u03c5\u03bf \u03c0\u03bf\u03c5 \u03ad\u03c7\u03b5\u03b9 \u03b4\u03b5\u03c3\u03bc\u03b5\u03c5\u03c4\u03b5\u03af \u03b3\u03b9\u03b1 \u03c4\u03b7\u03bd \u03b1\u03bb\u03bb\u03b1\u03b3\u03ae.<\/li>\n<\/ul>\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<ul class=\"wp-block-list\">\n<li><strong>\u0395\u03bd\u03b7\u03bc\u03b5\u03c1\u03c9\u03c4\u03b9\u03ba\u03ae mehrsprachige Plattform:<\/strong> Der Verein hat mit <a href=\"https:\/\/dupmecp2.eu\/el\">www.dupmecp2.eu<\/a> eine Website ins Leben gerufen, die in mehreren Sprachen \u00fcber das MECP2-Duplikationssyndrom inform. \u0391\u03c5\u03c4\u03ae \u03b7 \u03c0\u03bb\u03b1\u03c4\u03c6\u03cc\u03c1\u03bc\u03b1 \u03c0\u03b1\u03c1\u03ad\u03c7\u03b5\u03b9 \u03c0\u03bb\u03b7\u03c1\u03bf\u03c6\u03bf\u03c1\u03af\u03b5\u03c2 \u03ba\u03b1\u03b9 \u03b5\u03bd\u03b7\u03bc\u03b5\u03c1\u03ce\u03c3\u03b5\u03b9\u03c2 \u03b3\u03b9\u03b1 \u03bd\u03b1 \u03b2\u03bf\u03b7\u03b8\u03ae\u03c3\u03b5\u03b9 \u03c4\u03b9\u03c2 \u03bf\u03b9\u03ba\u03bf\u03b3\u03ad\u03bd\u03b5\u03b9\u03b5\u03c2 \u03c3\u03c4\u03b7\u03bd \u03c0\u03bf\u03c1\u03b5\u03af\u03b1 \u03c4\u03bf\u03c5\u03c2.<\/li>\n<\/ul>\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<ul class=\"wp-block-list\">\n<li><strong>\u0395\u03ba\u03b4\u03b7\u03bb\u03ce\u03c3\u03b5\u03b9\u03c2 \u03ba\u03b1\u03b9 \u03c3\u03c5\u03b3\u03ba\u03ad\u03bd\u03c4\u03c1\u03c9\u03c3\u03b7 \u03c7\u03c1\u03b7\u03bc\u03ac\u03c4\u03c9\u03bd:<\/strong> \u0397 \u03c0\u03c1\u03ce\u03c4\u03b7 Online-Spendenaktion und -Veranstaltung des Vereins hat das Bewusstsein f\u00fcr die Krankheit gesch\u00e4rft und die Kraft der kollektiven Entschlossenheit demonstriert. \u0388\u03c7\u03b5\u03b9 \u03c0\u03c1\u03bf\u03b2\u03bb\u03b5\u03c6\u03b8\u03b5\u03af \u03c3\u03b7\u03bc\u03b1\u03bd\u03c4\u03b9\u03ba\u03ae \u03c7\u03c1\u03b7\u03bc\u03b1\u03c4\u03bf\u03b4\u03cc\u03c4\u03b7\u03c3\u03b7 \u03ba\u03b1\u03b9 \u03b5\u03c0\u03af \u03c4\u03bf\u03c5 \u03c0\u03b1\u03c1\u03cc\u03bd\u03c4\u03bf\u03c2 \u03c3\u03c7\u03b5\u03b4\u03b9\u03ac\u03b6\u03b5\u03c4\u03b1\u03b9 \u03ad\u03bd\u03b1 \u03c6\u03b9\u03bb\u03cc\u03b4\u03bf\u03be\u03bf, \u03bf\u03bb\u03bf\u03ba\u03bb\u03b7\u03c1\u03c9\u03bc\u03ad\u03bd\u03bf \u03c3\u03c7\u03ad\u03b4\u03b9\u03bf \u03c3\u03c5\u03b3\u03ba\u03ad\u03bd\u03c4\u03c1\u03c9\u03c3\u03b7\u03c2 \u03ba\u03b5\u03c6\u03b1\u03bb\u03b1\u03af\u03c9\u03bd, \u03c4\u03bf \u03bf\u03c0\u03bf\u03af\u03bf \u03b8\u03b1 \u03be\u03b5\u03ba\u03b9\u03bd\u03ae\u03c3\u03b5\u03b9 \u03c4\u03bf \u03c6\u03b8\u03b9\u03bd\u03cc\u03c0\u03c9\u03c1\u03bf.<\/li>\n<\/ul>\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<p>\u03a4\u03ce\u03c1\u03b1, \u03bc\u03b5\u03c4\u03ac \u03b1\u03c0\u03cc \u03c0\u03b5\u03c1\u03b9\u03c3\u03c3\u03cc\u03c4\u03b5\u03c1\u03bf \u03b1\u03c0\u03cc \u03ad\u03bd\u03b1 \u03c7\u03c1\u03cc\u03bd\u03bf, \u03b5\u03af\u03bc\u03b1\u03c3\u03c4\u03b5 \u03b3\u03b5\u03bc\u03ac\u03c4\u03bf\u03b9 \u03c3\u03c5\u03b3\u03ba\u03af\u03bd\u03b7\u03c3\u03b7 \u03ba\u03b1\u03b9 \u03b8\u03b1 \u03b8\u03ad\u03bb\u03b1\u03bc\u03b5 \u03bd\u03b1 \u03b5\u03ba\u03c6\u03c1\u03ac\u03c3\u03bf\u03c5\u03bc\u03b5 \u03c4\u03b7 \u03bc\u03b5\u03b3\u03ac\u03bb\u03b7 \u03bc\u03b1\u03c2 \u03b5\u03c5\u03b3\u03bd\u03c9\u03bc\u03bf\u03c3\u03cd\u03bd\u03b7 \u03c3\u03b5 \u03cc\u03bb\u03bf\u03c5\u03c2 \u03cc\u03c3\u03bf\u03b9 \u03c3\u03c5\u03bc\u03bc\u03b5\u03c4\u03b5\u03af\u03c7\u03b1\u03bd \u03c3\u03b5 \u03b1\u03c5\u03c4\u03cc \u03c4\u03bf \u03c4\u03b1\u03be\u03af\u03b4\u03b9. \u0397 \u03c5\u03c0\u03bf\u03c3\u03c4\u03ae\u03c1\u03b9\u03be\u03ae \u03c3\u03b1\u03c2 \u03ae\u03c4\u03b1\u03bd \u03b1\u03bd\u03b5\u03ba\u03c4\u03af\u03bc\u03b7\u03c4\u03b7.<\/p>\n\n<p>\u039a\u03ac\u03b8\u03b5 \u03b2\u03ae\u03bc\u03b1 \u03c0\u03bf\u03c5 \u03ba\u03ac\u03bd\u03b1\u03bc\u03b5, \u03ba\u03ac\u03b8\u03b5 \u03c0\u03c1\u03c9\u03c4\u03bf\u03b2\u03bf\u03c5\u03bb\u03af\u03b1 \u03c0\u03bf\u03c5 \u03b1\u03bd\u03b1\u03bb\u03ac\u03b2\u03b1\u03bc\u03b5 \u03ba\u03b1\u03b9 \u03ba\u03ac\u03b8\u03b5 \u03c3\u03cd\u03bd\u03b4\u03b5\u03c3\u03bc\u03bf\u03c2 \u03c0\u03bf\u03c5 \u03b4\u03b7\u03bc\u03b9\u03bf\u03c5\u03c1\u03b3\u03ae\u03c3\u03b1\u03bc\u03b5 \u03c3\u03c5\u03bd\u03ad\u03b2\u03b1\u03bb\u03b5 \u03c3\u03c4\u03b7\u03bd \u03b5\u03bb\u03c0\u03af\u03b4\u03b1 \u03b3\u03b9\u03b1 \u03ad\u03bd\u03b1 \u03ba\u03b1\u03bb\u03cd\u03c4\u03b5\u03c1\u03bf \u03bc\u03ad\u03bb\u03bb\u03bf\u03bd \u03b3\u03b9\u03b1 \u03c4\u03b1 \u03c0\u03b1\u03b9\u03b4\u03b9\u03ac \u03bc\u03b1\u03c2.<\/p>\n\n<p>\u039a\u03b1\u03b8\u03ce\u03c2 \u03b1\u03bd\u03b1\u03c0\u03bf\u03bb\u03bf\u03cd\u03bc\u03b5 \u03b1\u03c5\u03c4\u03ac \u03c4\u03b1 \u03b5\u03c0\u03b9\u03c4\u03b5\u03cd\u03b3\u03bc\u03b1\u03c4\u03b1, \u03b7 \u03b4\u03ad\u03c3\u03bc\u03b5\u03c5\u03c3\u03b7 \u03c4\u03b7\u03c2 \u03bf\u03bc\u03ac\u03b4\u03b1\u03c2 \u03bc\u03b1\u03c2 \u03c0\u03b1\u03c1\u03b1\u03bc\u03ad\u03bd\u03b5\u03b9 \u03b9\u03c3\u03c7\u03c5\u03c1\u03ae. \u0393\u03b9\u03bf\u03c1\u03c4\u03ac\u03b6\u03bf\u03c5\u03bc\u03b5 \u03bc\u03b9\u03b1 \u03bd\u03ad\u03b1 \u03c7\u03c1\u03bf\u03bd\u03b9\u03ac, \u03b1\u03bb\u03bb\u03ac \u03b5\u03af\u03bd\u03b1\u03b9 \u03b5\u03c0\u03af\u03c3\u03b7\u03c2 \u03bc\u03b9\u03b1 \u03c5\u03c0\u03b5\u03bd\u03b8\u03cd\u03bc\u03b9\u03c3\u03b7 \u03cc\u03c4\u03b9 \u03c5\u03c0\u03ac\u03c1\u03c7\u03bf\u03c5\u03bd \u03ba\u03b9 \u03ac\u03bb\u03bb\u03b1 \u03bd\u03b1 \u03ad\u03c1\u03b8\u03bf\u03c5\u03bd. \u03a4\u03bf \u03c4\u03b1\u03be\u03af\u03b4\u03b9 \u03b4\u03b5\u03bd \u03ad\u03c7\u03b5\u03b9 \u03b1\u03ba\u03cc\u03bc\u03b7 \u03c4\u03b5\u03bb\u03b5\u03b9\u03ce\u03c3\u03b5\u03b9, \u03ba\u03b1\u03b9 \u03cc\u03bb\u03bf\u03b9 \u03b1\u03bd\u03c5\u03c0\u03bf\u03bc\u03bf\u03bd\u03bf\u03cd\u03bc\u03b5 \u03b3\u03b9' \u03b1\u03c5\u03c4\u03cc.<\/p>\n\n<p>Hoffnung, Einigkeit und Fortschritt als Leitmotiv marschiert der Verein weiter.<\/p>","protected":false},"excerpt":{"rendered":"<p>Vor genau einem Jahr wurde der Verein \u00ab\u00a0Lasst uns MDS heilen &#8211; DupMECP2\u00a0\u00bb ins Leben gerufen. Die Geschichte des Vereins begann mit der Diagnose von Matteo im Jahr 2021. Nach [&hellip;]<\/p>","protected":false},"author":1,"featured_media":18350,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[57],"tags":[],"class_list":["post-18368","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-aktualitat"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Feiern eines Jahres des Fortschritts : Der Weg und die Erfolge des Vereins - 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\/el\/feiern-eines-jahres-des-fortschritts-der-weg-und-die-erfolge-des-vereins\/?lang=de\" \/>\n<meta property=\"og:locale\" content=\"el_GR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Feiern eines Jahres des Fortschritts : Der Weg und die Erfolge des Vereins - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Vor genau einem Jahr wurde der Verein \u00ab\u00a0Lasst uns MDS heilen &#8211; DupMECP2\u00a0\u00bb ins Leben gerufen. Die Geschichte des Vereins begann mit der Diagnose von Matteo im Jahr 2021. 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