{"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":"ambitionen-2025","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/de\/ambitionen-2025\/","title":{"rendered":"Unsere Ambitionen f\u00fcr 2025"},"content":{"rendered":"<p>Im Jahr 2024 hat die Gemeinschaft des MECP2-Duplikationssyndroms mit der Einleitung von nicht nur einer, sondern zwei klinischen Studien bemerkenswerte Meilensteine im Kampf um eine Heilung erlebt. Neben diesen wichtigen Entwicklungen sind wir auch stolz auf die Fortschritte, die wir bei der Unterst\u00fctzung von Familien gemacht haben. Als wichtigste Beispiele f\u00fcr unsere Bem\u00fchungen im Jahr 2024 m\u00f6chten wir besonders hervorheben:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Die Entwicklung von REMEDS, unserer Online-Registrierungs-Survey-Plattform f\u00fcr das MECP2-Duplikationssyndrom, die in Europa angesiedelt ist. Diese lebenswichtige Ressource stand im Mittelpunkt intensiver Arbeit im gesamten Jahr 2024 und soll Mitte 2025 an den Start gehen und den Weg f\u00fcr eine bessere Datenerfassung und ein besseres Verst\u00e4ndnis des Syndroms ebnen.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Die Produktion von zwei Webinaren und einem E-Book, um Familien zu helfen, ein tieferes Verst\u00e4ndnis der ATTUNE-Studie und ihrer Auswirkungen zu erlangen.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Numerous charity events in Austria aimed at raising awareness of MECP2 Duplication Syndrome.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Die Genehmigung des \u00f6sterreichischen Finanzministeriums, die es erm\u00f6glicht, dass Spenden, die ab Januar 1, 2024 an uns get\u00e4tigt werden, letztendlich steuerbeg\u00fcnstigt sind.&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>2024 war ein sehr aufregendes Jahr f\u00fcr unsere Gemeinde und unsere Organisation. Wir erkennen jedoch, dass unsere Reise noch lange nicht zu Ende ist...&nbsp;<\/p>\n\n\n\n<p>Ihre Unterst\u00fctzung seit unserer Gr\u00fcndung im Sommer 2022 war wirklich erstaunlich und gibt uns die Zuversicht, weiterzumachen. Dank Ihrer Hilfe k\u00f6nnen wir uns weiterhin f\u00fcr Familien mit MECP2-Duplikationssyndrom einsetzen, Forschung finanzieren und ihnen Unterst\u00fctzung bieten.&nbsp;<\/p>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Da wir bis 2025 vorausblicken, sind wir verpflichtet:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Verbindung von akademischer Forschung und pharmazeutischen Unternehmen zur Beschleunigung der therapeutischen Entwicklung und zur Verbesserung der diagnostischen Instrumente.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>die Durchf\u00fchrung sinnvoller klinischer Studien vorantreiben, z. B. durch die Zusammenarbeit mit Pharmaunternehmen und Gesundheitsbeh\u00f6rden wie der FDA oder der EMA.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Bereitstellung finanzieller Unterst\u00fctzung f\u00fcr Familien, um ihnen den Zugang zu wichtigen medizinischen Ger\u00e4ten und Therapien zu erm\u00f6glichen, die auf ihre einzigartigen Bed\u00fcrfnisse zugeschnitten sind.&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><strong>Unsere Arbeit w\u00e4re ohne Ihre fortw\u00e4hrende Unterst\u00fctzung nicht m\u00f6glich. Vielen Dank, dass Sie Teil unserer Reise sind.&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\/de\/ambitionen-2025\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\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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