{"id":4935,"date":"2023-01-23T15:33:20","date_gmt":"2023-01-23T23:33:20","guid":{"rendered":"https:\/\/deepconnections.net\/?page_id=4935"},"modified":"2023-01-23T15:33:20","modified_gmt":"2023-01-23T23:33:20","slug":"rare-disease-day-and-dees","status":"publish","type":"page","link":"https:\/\/deepconnections.net\/de_at\/rare-disease-day-and-dees\/","title":{"rendered":"Tag der seltenen Erkrankungen und DEEs"},"content":{"rendered":"<h2>\n\t\tTag der seltenen Erkrankungen und die DEEs\n\t<\/h2>\n\t<p>Der Tag der seltenen Erkrankungen wird jedes Jahr am letzten Tag im Februar gefeiert. An diesem Tag soll das Bewusstsein f\u00fcr die rund 7.000 seltenen Erkrankungen gesch\u00e4rft werden, von denen weltweit \u00fcber 300 Millionen Menschen betroffen sind.<\/p>\n<p>Entwicklungsbedingte und epileptische Enzephalopathien (DEEs) werden oft als selten angesehen. In den USA <a href=\"https:\/\/www.fda.gov\/media\/99546\/download\" target=\"_blank\" rel=\"noopener noreferrer\">Gesetz \u00fcber Arzneimittel f\u00fcr seltene Leiden<\/a> definiert eine seltene Krankheit als einen Zustand, der weniger als 200.000 Menschen im Land betrifft.<\/p>\n<p>Wir finden t\u00e4glich mehr DEEs und Menschen, die davon betroffen sind.<\/p>\n<p>Es ist unklar, wie h\u00e4ufig DEEs sind, aber die gesch\u00e4tzte j\u00e4hrliche Gesamtinzidenz von monogenen Epilepsien in einer aktuellen <a href=\"https:\/\/academic.oup.com\/brain\/article\/142\/8\/2303\/5532195?login=false\">nationale Studie aus Schottland<\/a> betrug 1 pro 2120 Lebendgeburten.<\/p>\n<p><a href=\"http:\/\/epilepsygenetics.net\/2023\/01\/18\/the-history-of-epilepsy-genetics\/\">Dieser aktuelle Beitrag<\/a> (und das Bild unten) verr\u00e4t etwas mehr \u00fcber genetisch bedingte Epilepsien und bietet eine aktualisierte Liste der vielen neuen Diagnosen, die mit genetisch bedingten\/seltenen Epilepsien in Zusammenhang stehen.<\/p>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2023\/01\/History2022Ingo-768x1024.jpeg\" alt=\"History2022Ingo\" itemprop=\"image\" height=\"1024\" width=\"768\" title=\"Geschichte2022Ingo\" onerror=\"this.style.display='none'\"  \/>","protected":false},"excerpt":{"rendered":"<p>Rare Disease Day and the DEEs Rare disease day is celebrated on the last day of February every year. It is a day to raise awareness of the roughly 7000&hellip;<\/p>","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"footnotes":""},"class_list":["post-4935","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.1 (Yoast SEO v28.5) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Rare Disease Day and DEEs - DEE-P Information Resource Center<\/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:\/\/deepconnections.net\/de_at\/rare-disease-day-and-dees\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rare Disease Day and DEEs\" \/>\n<meta property=\"og:description\" content=\"Rare Disease Day and the DEEs Rare disease day is celebrated on the last day of February every year. 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