{"id":6057,"date":"2024-10-25T11:29:46","date_gmt":"2024-10-25T09:29:46","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?page_id=6057"},"modified":"2024-10-28T11:54:22","modified_gmt":"2024-10-28T10:54:22","slug":"mooc-diagnosis-rare-diseases","status":"publish","type":"page","link":"https:\/\/ern-ithaca.eu\/de\/education\/mooc-diagnosis-rare-diseases\/","title":{"rendered":"MOOC \u201cDiagnose seltener Krankheiten\u201d"},"content":{"rendered":"<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1900\" height=\"298\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-1900x298.png\" alt=\"\" class=\"wp-image-6181\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-1900x298.png 1900w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-600x94.png 600w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-768x120.png 768w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-1536x241.png 1536w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-2048x321.png 2048w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-1320x207.png 1320w\" sizes=\"auto, (max-width: 1900px) 100vw, 1900px\" \/><\/figure>\n\n\n\n<div style=\"height:41px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>ERN-ITHACA ist Partner des von der Fondation Maladies Rares und EDERA organisierten Massive Open Online Course (MOOC) zum Thema \u201c<a href=\"https:\/\/www.futurelearn.com\/courses\/rare-genetic-disease\">Diagnose seltener Krankheiten: Von der Klinik zur Forschung und zur\u00fcck<\/a>\u201c.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>In diesem Zusammenhang suchen wir f\u00fcr den Zeitraum 2024\u20132025 junge \u00c4rzte, die das MOOC als Mentoren f\u00fcr die Studierenden unterst\u00fctzen, indem sie Frage-und-Antwort-Runden, sogenannte \u201eFacilitation-Fenster\u201c, leiten. Ihr Engagement wird belohnt. Bei Interesse wenden Sie sich bitte an Anne: anne.hugon@aphp.fr<\/em><\/p>\n\n\n\n<div style=\"height:36px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\">Erfahren Sie mehr \u00fcber die Diagnose seltener Krankheiten, Gentests und diagnostische Forschung<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Rund 30 Millionen Menschen in Europa leben mit einer seltenen genetischen Erkrankung (eine Erkrankung, von der weniger als 1 von 2.000 Menschen betroffen ist).<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Dieser Kurs bietet eine Auseinandersetzung mit zentralen Fragen rund um die aktuelle Diagnostikforschung bei seltenen Krankheiten und den damit verbundenen aktuellen Themen sowie Einblicke in die Erfahrungen der Patienten.<\/p>\n\n\n\n<div style=\"height:36px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"learn-about-rare-genetic-disease-diagnosis-and-testing\">Erfahren Sie mehr \u00fcber die Diagnose und Untersuchung seltener genetischer Erkrankungen<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">In den letzten zwei Jahrzehnten wurden bei der Diagnose seltener genetischer Erkrankungen gro\u00dfe Fortschritte erzielt.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Sie erfahren mehr \u00fcber die Fortschritte in der diagnostischen Forschung sowie \u00fcber die Arten von Gentests, die f\u00fcr seltene Krankheiten zur Verf\u00fcgung stehen, und dar\u00fcber, welche Auswirkungen eine Diagnose \u2013 oder das Fehlen einer Diagnose \u2013 auf das Leben der Patienten hat.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Sie werden sich mit zentralen Themen im Zusammenhang mit seltenen genetischen Erkrankungen auseinandersetzen und eigene, internetbasierte Recherchen zu verschiedenen diagnostischen Forschungsthemen durchf\u00fchren.<\/p>\n\n\n\n<div style=\"height:36px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"understand-the-impact-of-technology-in-diagnostic-research\">Die Auswirkungen der Technologie auf die diagnostische Forschung verstehen<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Technologie spielt bei der Diagnose seltener Krankheiten eine wichtige Rolle.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Im Rahmen dieses Kurses befassen Sie sich mit den technologischen Fortschritten in der medizinischen Forschung und der Diagnose seltener Krankheiten und lernen die Bedeutung des Datenaustauschs sowie die Rolle der Technologie beim Verst\u00e4ndnis des menschlichen Genoms kennen.<\/p>\n\n\n\n<div style=\"height:36px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"gain-insights-into-patients-experiences-of-rare-genetic-disease\">Erhalten Sie Einblicke in die Erfahrungen von Patienten mit seltenen genetischen Erkrankungen<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Dieser Kurs bietet Ihnen zudem die M\u00f6glichkeit, Einblicke in das Leben von Patienten zu gewinnen, die mit einer seltenen genetischen Erkrankung leben.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Gastdozenten aus dem Bereich der seltenen Krankheiten werden zudem \u00fcber ihre aktuellen Forschungsprojekte sprechen und Einblicke aus ihrer direkten Arbeit mit Patienten vermitteln.<\/p>\n\n\n\n<div style=\"height:36px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\">Was wirst du erreichen?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Am Ende des Kurses werden Sie in der Lage sein, \u2026<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Erl\u00e4utern Sie die wichtigsten Formen der Vererbung.<\/li>\n\n\n\n<li>Beschreiben Sie, was eine seltene Krankheit ist und welche Auswirkungen sie \u00fcber den medizinischen Bereich hinaus hat.<\/li>\n\n\n\n<li>Verstehen, wie seltene Krankheiten im medizinischen Umfeld diagnostiziert werden<\/li>\n\n\n\n<li>Erl\u00e4utern Sie die Auswirkungen, die das Vorliegen bzw. das Fehlen einer Diagnose f\u00fcr Patienten mit seltenen Krankheiten und deren Familien hat.<\/li>\n\n\n\n<li>Beschreiben Sie, was eine diagnostische Odyssee ist<\/li>\n\n\n\n<li>Beurteilen Sie, welche Gentests f\u00fcr ein bestimmtes klinisches Szenario am besten geeignet sind<\/li>\n\n\n\n<li>Geeignete Anwendungsm\u00f6glichkeiten von NGS-Technologien f\u00fcr bestimmte klinische Szenarien im diagnostischen und forschungsbezogenen Kontext identifizieren<\/li>\n\n\n\n<li>Verstehen, was Varianten mit unklarer Bedeutung (VUS) und eine klinische Neubewertung sind<\/li>\n\n\n\n<li>Beschreiben Sie, wie sich der Bereich der Diagnostik seltener Krankheiten in den letzten zehn Jahren entwickelt hat.<\/li>\n\n\n\n<li>Entdecken Sie einige Bioinformatik- und Prognosetools und deren Nutzen bei der Diagnose seltener Krankheiten<\/li>\n\n\n\n<li>Denken Sie \u00fcber einige ethische, pers\u00f6nliche und gesellschaftliche Herausforderungen nach, die bei der Diagnose seltener Krankheiten auftreten.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/www.futurelearn.com\/courses\/rare-genetic-disease\"><strong>HIER<\/strong><\/a> um an dem Kurs teilzunehmen.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>ERN-ITHACA is partner of the Fondation Maladies Rares x EDERA Massive Open Online Course (MOOC) on &#8220;Diagnosing Rare Diseases: from the Clinic to Research and back&#8220;. In this context, we are recruting in 2024-2025 young doctors to support the MOOC as mentors for students, by conducting questions-and-answers periods, aka facilitations windows. Efforts will be rewarded. [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":6023,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-6057","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>MOOC &quot;Diagnosis Rare Diseases&quot; - ERN ITHACA<\/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:\/\/ern-ithaca.eu\/de\/education\/mooc-diagnosis-rare-diseases\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"MOOC &quot;Diagnosis Rare Diseases&quot; - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"ERN-ITHACA is partner of the Fondation Maladies Rares x EDERA Massive Open Online Course (MOOC) on &#8220;Diagnosing Rare Diseases: from the Clinic to Research and back&#8220;. 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