{"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\/es_ar\/rare-disease-day-and-dees\/","title":{"rendered":"Rare Disease Day and DEEs"},"content":{"rendered":"<h2>\n\t\tRare Disease Day and the DEEs\n\t<\/h2>\n\t<p>Rare disease day is celebrated on the last day of February every year. It is a day to raise awareness of the roughly 7000 rare diseases that affect over 300 million people around the world.<\/p>\n<p>Developmental and epileptic encephalopathies, or DEEs, are often considered rare. In the U.S., the <a href=\"https:\/\/www.fda.gov\/media\/99546\/download\" target=\"_blank\" rel=\"noopener noreferrer\">Orphan Drug Act<\/a> defines a rare disease as a condition that impacts less than 200,000 people in the country.<\/p>\n<p>We are finding more DEEs and people impacted by them every day.<\/p>\n<p>It is unclear how common DEEs are but the overall estimated annual incidence of single-gene epilepsies in a recent <a href=\"https:\/\/academic.oup.com\/brain\/article\/142\/8\/2303\/5532195?login=false\">national study from Scotland<\/a> was 1 per 2120 live births.<\/p>\n<p><a href=\"http:\/\/epilepsygenetics.net\/2023\/01\/18\/the-history-of-epilepsy-genetics\/\">This recent post<\/a> (and the image below) shares a bit more about genetic epilepsies and shares an updates list of the many emerging diagnosis associated with genetic\/rare epilepsies.<\/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=\"History2022Ingo\" 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 v28.2) - 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\/es_ar\/rare-disease-day-and-dees\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\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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