{"id":2625,"date":"2020-05-29T17:01:37","date_gmt":"2020-05-30T00:01:37","guid":{"rendered":"http:\/\/wishesforelliott.flywheelsites.com\/?p=2625"},"modified":"2022-06-20T18:06:40","modified_gmt":"2022-06-21T01:06:40","slug":"improving-the-quality-of-rare-childhood-epilepsy-care","status":"publish","type":"post","link":"https:\/\/deepconnections.net\/as\/2020\/05\/29\/improving-the-quality-of-rare-childhood-epilepsy-care\/","title":{"rendered":"\u09ac\u09bf\u09f0\u09b2 \u09b6\u09bf\u09b6\u09c1\u09f0 \u09ae\u09c3\u0997\u09c0\u09f0\u09cb\u0997\u09a4 \u09af\u09a4\u09cd\u09a8\u09f0 \u09ae\u09be\u09a8 \u0989\u09a8\u09cd\u09a8\u09a4 \u0995\u09f0\u09be"},"content":{"rendered":"<p class=\"wp-block-paragraph\">\u098f\u0987 \u0997\u09c1\u09a3\u0997\u09a4 \u09ae\u09be\u09a8\u09f0 \u09af\u09a4\u09cd\u09a8 \u09f1\u09c7\u09ac\u09bf\u09a8\u09be\u09f0\u09f0 \u0986\u0981\u09a4 \u09a7\u09f0\u09c7 \u0987\u09b2\u09bf\u09af\u09bc\u099f\u09f0 \u09ae\u09be\u09a4\u09c3 \u0997\u09c7\u09ac\u09cd\u09f0\u09bf\u09af\u09bc\u09c7\u09b2 \u0995\u09a8\u09c7\u0995\u09be\u09f0\u09c7 \u09af\u09bf\u0997\u09f0\u09be\u0995\u09c0\u09f0 SCN8A-\u09b8\u09ae\u09cd\u09aa\u09f0\u09cd\u0995\u09c0\u09af\u09bc \u09ae\u09c3\u0997\u09c0\u09f0\u09cb\u0997 \u0986\u09f0\u09c1 \u0997\u09c1\u09f0\u09c1\u09a4\u09f0 DEE \u0986\u099b\u09c7 \u0986\u09f0\u09c1 \u09a4\u09c7\u0993\u0981\u09f0 \u09b8\u09b9-\u09aa\u09cd\u09f0\u09a4\u09bf\u09b7\u09cd\u09a0\u09be\u09aa\u0995 <a href=\"https:\/\/www.wishesforelliott.com\/\">\u0987\u09b2\u09bf\u09af\u09bc\u099f\u09f0 \u09ac\u09be\u09ac\u09c7 \u09b6\u09c1\u09ad\u09c7\u099a\u09cd\u099b\u09be <\/a>\u0986\u09f0\u09c1 DEE-P \u09b8\u0982\u09af\u09cb\u0997\u09b8\u09ae\u09c2\u09b9\u0964<\/p>\n\n\n\n<hr class=\"wp-block-separator\"\/>\n\n\n\n<p class=\"wp-block-paragraph\">\u098f\u0987\u099f\u09cb \u09b9\u09c8\u099b\u09c7 \u09e8\u09e6\u09e8\u09e6 \u099a\u09a8\u09f0 \u09e8\u09ed \u09ae\u09c7\u2019\u09f0 \u09aa\u09f0\u09be DEE-P Connections \u09f1\u09c7\u09ac\u09bf\u09a8\u09be\u09f0\u09f0 \u09f0\u09c7\u0995\u09f0\u09cd\u09a1\u09bf\u0982 <em>\u201c\u09ac\u09bf\u09f0\u09b2 \u09b6\u09c8\u09b6\u09f1\u09f0 \u09ae\u09c3\u0997\u09c0\u09f0\u09cb\u0997\u09f0 \u09af\u09a4\u09cd\u09a8\u09f0 \u09ae\u09be\u09a8 \u0989\u09a8\u09cd\u09a8\u09a4 \u0995\u09f0\u09be\u201d <\/em>\u09af\u09bf\u09af\u09bc\u09c7 \u0986\u09ae\u09be\u0995 \u0997\u09c1\u09f0\u09c1\u09a4\u09f0 \u09ac\u09bf\u0995\u09be\u09b6 \u0986\u09f0\u09c1 \u09ae\u09c3\u0997\u09c0\u09f0\u09cb\u0997\u09c0 \u098f\u09a8\u0995\u09c7\u09ab\u09c7\u09b2\u09cb\u09aa\u09c7\u09a5\u09c0 (DEE) \u09f0\u09cb\u0997\u09c0\u09f0 \u09ac\u09be\u09ac\u09c7 \u09ae\u09c3\u0997\u09c0\u09f0\u09cb\u0997\u09f0 \u09af\u09a4\u09cd\u09a8\u09f0 \u09ae\u09be\u09a8 \u0989\u09a8\u09cd\u09a8\u09a4 \u0995\u09f0\u09be\u09f0 \u09ac\u09be\u09ac\u09c7 \u099a\u09b2\u09bf \u09a5\u0995\u09be \u09a6\u09c1\u099f\u09be \u09a1\u09be\u0999\u09f0 \u09aa\u09cd\u09f0\u099a\u09c7\u09b7\u09cd\u099f\u09be\u09f0 \u09b8\u09c8\u09a4\u09c7 \u09aa\u09f0\u09bf\u099a\u09af\u09bc \u0995\u09f0\u09be\u0987 \u09a6\u09bf\u09b2\u09c7\u0964 \u09b8\u0995\u09b2\u09cb \u09aa\u09c7\u09a8\u09c7\u09b2\u09bf\u09b7\u09cd\u099f\u09f0 \u09b8\u09ae\u09a8\u09cd\u09ac\u09af\u09bc\u09a4 \u09f1\u09c7\u09ac\u09bf\u09a8\u09be\u09f0\u0996\u09a8\u09f0 \u09aa\u09f0\u09bf\u0995\u09b2\u09cd\u09aa\u09a8\u09be \u0995\u09f0\u09be \u09b9\u09c8\u099b\u09bf\u09b2\u0964<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<h3 class=\"has-normal-font-size wp-block-heading\"><strong>\u0986\u09ae\u09be\u09f0 \u09aa\u09c7\u09a8\u09c7\u09b2\u09bf\u09b7\u09cd\u099f, \u09ac\u09bf\u09f0\u09b2 \u09ae\u09c3\u0997\u09c0\u09f0\u09cb\u0997\u09f0 \u09ac\u09be\u09ac\u09c7 \u09b8\u0995\u09b2\u09cb \u0985\u0995\u09cd\u09b2\u09be\u09a8\u09cd\u09a4 \u09b8\u09ae\u09f0\u09cd\u09a5\u0995, \u0985\u09a8\u09cd\u09a4\u09f0\u09cd\u09ad\u09c1\u0995\u09cd\u09a4:<\/strong><\/h3>\n\n\n\n<h3 class=\"has-normal-font-size wp-block-heading\"><em>\u09b6\u09bf\u09b6\u09c1\u09f0 \u09ae\u09c3\u0997\u09c0\u09f0\u09cb\u0997 \u09b6\u09bf\u0995\u09cd\u09b7\u09a3 \u09b8\u09cd\u09ac\u09be\u09b8\u09cd\u09a5\u09cd\u09af\u09b8\u09c7\u09f1\u09be \u09ac\u09cd\u09af\u09f1\u09b8\u09cd\u09a5\u09be (PELHS)\u09f0 \u09aa\u09f0\u09be:<\/em><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u0985\u09a8\u09c1\u09aa \u09aa\u09c7\u099f\u09c7\u09b2 <\/strong>\u2013 \u09a8\u09c7\u099a\u09a8\u09f1\u09be\u0987\u09a1 \u099a\u09bf\u09b2\u09a1\u09cd\u09f0\u09c7\u09a8\u099b\u09f0 \u09b6\u09bf\u09b6\u09c1 \u09b8\u09cd\u09a8\u09be\u09af\u09bc\u09c1\u09ac\u09bf\u099c\u09cd\u099e\u09be\u09a8\u09f0 \u099b\u09c7\u0995\u099a\u09a8 \u099a\u09bf\u09ab \u0986\u09f0\u09c1 \u09a6\u09cd\u09af \u0985\u09b9\u09be\u0987\u0985\u2019 \u09b7\u09cd\u099f\u09c7\u099f \u0987\u0989\u09a8\u09bf\u09ad\u09be\u09f0\u09cd\u099a\u09bf\u099f\u09bf \u0995\u09b2\u09c7\u099c \u0985\u09f1 \u09ae\u09c7\u09a1\u09bf\u099a\u09bf\u09a8\u09f0 \u0995\u09cd\u09b2\u09bf\u09a8\u09bf\u0995\u09c7\u09b2 \u09aa\u09c7\u09a1\u09bf\u09af\u09bc\u09be\u099f\u09cd\u09f0\u09bf\u0995\u09cd\u09b8 \u098f\u09a3\u09cd\u09a1 \u09a8\u09bf\u0989\u09f0\u2019\u09b2\u099c\u09c0\u09f0 \u09b8\u09b9\u09af\u09cb\u0997\u09c0 \u0985\u09a7\u09cd\u09af\u09be\u09aa\u0995<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u098f\u09ae\u09bf \u099c\u09be\u09ae\u09cd\u09aa\u09bf<\/strong> \u2013 \u09ee \u09ac\u099b\u09f0\u09c0\u09af\u09bc\u09be \u098f\u09ae\u09be\u09f0 \u09aa\u09bf\u09a4\u09c3-\u09ae\u09be\u09a4\u09c3 \u09af\u09bf\u099c\u09a8\u09f0\u09cb \u09ae\u09c3\u0997\u09c0\u09f0\u09cb\u0997 \u09b9\u09c8\u099b\u09c7 \u09b8\u0982\u0998\u099f\u09bf\u09a4\u09ad\u09be\u09f1\u09c7\u0964 \u09e8\u09e6\u09e7\u09e8 \u099a\u09a8\u09f0 \u09aa\u09f0\u09be \u09f0\u09cb\u0997\u09c0\u09f0 \u09aa\u09cb\u09b7\u0995\u09a4\u09be\u09a4 \u0995\u09be\u09ae \u0986\u09f0\u09ae\u09cd\u09ad \u0995\u09f0\u09be \u098f\u09ae\u09bf\u09af\u09bc\u09c7 \u09ac\u099b\u09f0 \u09ac\u099b\u09f0 \u09a7\u09f0\u09bf \u09ac\u09bf\u09ad\u09bf\u09a8\u09cd\u09a8 \u09b8\u09ae\u09bf\u09a4\u09bf\u09a4 \u0995\u09be\u09f0\u09cd\u09af\u09a8\u09bf\u09f0\u09cd\u09ac\u09be\u09b9 \u0995\u09f0\u09bf \u0986\u09b9\u09bf\u099b\u09c7 \u0986\u09f0\u09c1 \u09ac\u09f0\u09cd\u09a4\u09ae\u09be\u09a8 \u09aa\u09bf\u0987\u098f\u09b2\u098f\u0987\u099a\u098f\u099b\u09f0 \u0985\u09ad\u09bf\u09ad\u09be\u09f1\u0995 \u09aa\u09cd\u09f0\u09a4\u09bf\u09a8\u09bf\u09a7\u09bf \u09b9\u09bf\u099a\u09be\u09aa\u09c7 \u0995\u09be\u09ae \u0995\u09f0\u09bf \u0986\u09b9\u09bf\u099b\u09c7\u0964 \u098f\u09ae\u09bf\u09af\u09bc\u09c7 \u09b8\u09cd\u09ac\u09be\u09ae\u09c0 \u0986\u09f0\u09c1 \u09a4\u09bf\u09a8\u09bf\u099f\u09be \u09b8\u09a8\u09cd\u09a4\u09be\u09a8\u09f0 \u09b8\u09c8\u09a4\u09c7 \u098f\u09ae \u0986\u0987\u09f0 \u098f\u09a8 \u0986\u09f0\u09cd\u09ac\u09be\u09f0\u09a4 \u09a5\u09be\u0995\u09c7\u0964<br><\/p>\n\n\n\n<h3 class=\"has-normal-font-size wp-block-heading\"><em>\u09ae\u09c3\u0997\u09c0\u09f0\u09cb\u0997 \u09b6\u09bf\u0995\u09cd\u09b7\u09a3 \u09b8\u09cd\u09ac\u09be\u09b8\u09cd\u09a5\u09cd\u09af\u0995\u09f0\u09cd\u09ae \u09ac\u09cd\u09af\u09f1\u09b8\u09cd\u09a5\u09be (ELHS)\u09f0 \u09aa\u09f0\u09be:<\/em><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u099c\u09c7\u09ab \u09ac\u09c1\u099a\u09be\u09b2\u099f\u09be\u09f0<\/strong> \u2013 \u09b6\u09bf\u09b6\u09c1 \u09b8\u09cd\u09a8\u09be\u09af\u09bc\u09c1 \u09ac\u09bf\u09b6\u09c7\u09b7\u099c\u09cd\u099e \u0986\u09f0\u09c1 \u098f\u09aa\u09bf\u09b2\u09c7\u09aa\u09cd\u09b8\u09bf \u09ab\u09be\u0989\u09a3\u09cd\u09a1\u09c7\u09b6\u09cd\u09af\u09a8 \u0985\u09f1 \u0986\u09ae\u09c7\u09f0\u09bf\u0995\u09be\u09f0 \u09aa\u09f0\u09be\u09ae\u09f0\u09cd\u09b6\u09a6\u09be\u09a4\u09be<br><br><strong>\u09a8\u09bf\u0995\u09cb\u09b2 \u09ae\u09be\u09f0\u09c7<\/strong> \u2013 \u09ae\u09c3\u0997\u09c0\u09f0\u09cb\u0997\u09c0 \u09f0\u2019\u09a8\u09be\u09a8\u09f0 \u09aa\u09bf\u09a4\u09c3-\u09ae\u09be\u09a4\u09c3; \u098f\u09aa\u09bf\u09b2\u09c7\u09aa\u09cd\u09b8\u09bf \u09ab\u09be\u0989\u09a3\u09cd\u09a1\u09c7\u09b6\u09cd\u09af\u09a8\u09f0 \u0995\u09f0\u09cd\u09aa\u09f0\u09c7\u099f \u09ab\u09bf\u09b2\u09be\u09a8\u09cd\u09a5\u09cd\u09f0\u09aa\u09bf \u0985\u09ab\u09bf\u099a\u09be\u09f0 \u0986\u09f0\u09c1 \u099a\u09bf \u098f\u0987\u099a \u0985\u2019 \u09aa\u09bf \u09aa\u09c7\u099a\u09c7\u09a3\u09cd\u099f \u09ab\u09c7\u09ae\u09bf\u09b2\u09bf \u09aa\u09be\u09f0\u09cd\u099f\u09a8\u09be\u09f0\u0964<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"DEE-P - \u09ac\u09bf\u09f0\u09b2 \u09b6\u09c8\u09b6\u09f1\u09f0 \u09ae\u09c3\u0997\u09c0\u09f0\u09cb\u0997\u09f0 \u09af\u09a4\u09cd\u09a8\u09f0 \u09ae\u09be\u09a8 \u0989\u09a8\u09cd\u09a8\u09a4 \u0995\u09f0\u09be\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/NDNEOHuNLxg?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">\u0985\u09a7\u09bf\u0995 DEE \u09b8\u09ae\u09cd\u09aa\u09a6\u09f0 \u09ac\u09be\u09ac\u09c7, \u0986\u09ae\u09be\u09f0...\u00a0<a href=\"https:\/\/deepconnections.net\/as\/resource-center-main\/\">\u09b8\u09ae\u09cd\u09aa\u09a6 \u0995\u09c7\u09a8\u09cd\u09a6\u09cd\u09f0<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>This quality of care webinar was moderated by Gabrielle Conecker, mother to Elliott who has SCN8A-related epilepsy and severe DEE, and is Co-Founder of Wishes for Elliott and DEE-P Connections.&hellip;<\/p>","protected":false},"author":4,"featured_media":3522,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","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":""},"categories":[1044,1016,1116,1024,1025],"tags":[1043,1020,1029,1026],"class_list":["post-2625","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-epilepsy-care","category-medical","category-participating-research","category-video","category-webinar","tag-epilepsy-care","tag-medical","tag-video","tag-webinar"],"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>Improving the Quality of Care in Rare Childhood Epilepsy<\/title>\n<meta name=\"description\" content=\"DEE-P Information Resource Center - This webinar covers two major efforts to improve the quality of epilepsy care for those with severe DEEs\" \/>\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\/as\/2020\/05\/29\/improving-the-quality-of-rare-childhood-epilepsy-care\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Improving the Quality of Care in Rare Childhood Epilepsy\" \/>\n<meta property=\"og:description\" content=\"This quality of care webinar was moderated by Gabrielle Conecker, mother to Elliott 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\/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Gabi Conecker\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"1 \u09ae\u09bf\u09a8\u09bf\u099f\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/deepconnections.net\\\/2020\\\/05\\\/29\\\/improving-the-quality-of-rare-childhood-epilepsy-care\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/deepconnections.net\\\/2020\\\/05\\\/29\\\/improving-the-quality-of-rare-childhood-epilepsy-care\\\/\"},\"author\":{\"name\":\"Gabi Conecker\",\"@id\":\"https:\\\/\\\/deepconnections.net\\\/#\\\/schema\\\/person\\\/51b597d27a20a71b2bcafac4cbb24550\"},\"headline\":\"Improving the Quality of Care in Rare Childhood 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