{"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\/ug\/2020\/05\/29\/improving-the-quality-of-rare-childhood-epilepsy-care\/","title":{"rendered":"\u0626\u0627\u0632 \u0626\u06c7\u0686\u0631\u0627\u064a\u062f\u0649\u063a\u0627\u0646 \u0628\u0627\u0644\u0649\u0644\u0627\u0631 \u062a\u06c7\u062a\u0642\u0627\u0642\u0644\u0649\u0642 \u0643\u06d0\u0633\u0649\u0644\u0649\u0646\u0649\u06ad \u062f\u0627\u06cb\u0627\u0644\u0627\u0634 \u0633\u06c8\u067e\u0649\u062a\u0649\u0646\u0649 \u064a\u06c7\u0642\u0649\u0631\u0649 \u0643\u06c6\u062a\u06c8\u0631\u06c8\u0634"},"content":{"rendered":"<p class=\"wp-block-paragraph\">\u0628\u06c7 \u062e\u0649\u0644 \u062f\u0627\u06cb\u0627\u0644\u0627\u0634 \u062a\u0648\u0631 \u0628\u06d0\u062a\u0649\u0646\u0649 Gabrielle Conecker \u060c \u0626\u0627\u0646\u0649\u0633\u0649 Elliott \u0646\u0649\u06ad SCN8A \u06af\u06d5 \u0645\u06c7\u0646\u0627\u0633\u0649\u06cb\u06d5\u062a\u0644\u0649\u0643 \u062a\u06c7\u062a\u0642\u0627\u0642\u0644\u0649\u0642 \u0643\u06d0\u0633\u0649\u0644\u0649 \u06cb\u06d5 \u0626\u06d0\u063a\u0649\u0631 \u062f\u06d5\u0631\u0649\u062c\u0649\u062f\u0649\u0643\u0649 DEE \u0643\u06d0\u0633\u0649\u0644\u0649\u06af\u06d5 \u06af\u0649\u0631\u0649\u067e\u062a\u0627\u0631 \u0628\u0648\u0644\u063a\u0627\u0646 \u060c \u06be\u06d5\u0645\u062f\u06d5 \u0628\u0649\u0631\u0644\u06d5\u0634\u0645\u06d5 \u0642\u06c7\u0631\u063a\u06c7\u0686\u0649\u0633\u0649. <a href=\"https:\/\/www.wishesforelliott.com\/\">Elliott \u0646\u0649\u06ad \u062a\u0649\u0644\u06d5\u0643\u0644\u0649\u0631\u0649 <\/a>\u06cb\u06d5 DEE-P \u0626\u06c7\u0644\u0649\u0646\u0649\u0634\u0649.<\/p>\n\n\n\n<hr class=\"wp-block-separator\"\/>\n\n\n\n<p class=\"wp-block-paragraph\">\u0628\u06c7 DEE-P \u0626\u06c7\u0644\u0649\u0646\u0649\u0634 \u062a\u0648\u0631 \u0628\u06d0\u0643\u0649\u062a\u0649\u0646\u0649\u06ad 2020-\u064a\u0649\u0644\u0649 5-\u0626\u0627\u064a\u0646\u0649\u06ad 27-\u0643\u06c8\u0646\u0649\u062f\u0649\u0643\u0649 \u062e\u0627\u062a\u0649\u0631\u0649\u0633\u0649 <em>\u00ab\u0626\u0627\u0632 \u0626\u06c7\u0686\u0631\u0627\u064a\u062f\u0649\u063a\u0627\u0646 \u0628\u0627\u0644\u0649\u0644\u0627\u0631 \u062a\u06c7\u062a\u0642\u0627\u0642\u0644\u0649\u0642 \u0643\u06d0\u0633\u0649\u0644\u0649\u0646\u0649\u06ad \u0633\u06c8\u067e\u0649\u062a\u0649\u0646\u0649 \u064a\u06c7\u0642\u0649\u0631\u0649 \u0643\u06c6\u062a\u06c8\u0631\u06c8\u0634\u00bb <\/em>\u0628\u06c7 \u0628\u0649\u0632\u06af\u06d5 \u0626\u06d0\u063a\u0649\u0631 \u062a\u06d5\u0631\u06d5\u0642\u0642\u0649\u064a\u0627\u062a \u06cb\u06d5 \u062a\u06c7\u062a\u0642\u0627\u0642\u0644\u0649\u0642 \u062e\u0627\u0631\u0627\u0643\u062a\u06d0\u0631\u0644\u0649\u0643 \u0645\u06d0\u06ad\u06d5 \u0642\u0627\u0646 \u062a\u0648\u0645\u06c7\u0631 \u0643\u06d0\u0633\u06d5\u0644\u0644\u0649\u0643\u0649 (DEEs) \u06af\u06d5 \u06af\u0649\u0631\u0649\u067e\u062a\u0627\u0631 \u0628\u0648\u0644\u063a\u0627\u0646\u0644\u0627\u0631\u063a\u0627 \u062a\u06c7\u062a\u0642\u0627\u0642\u0644\u0649\u0642 \u0643\u06d0\u0633\u0649\u0644\u0649\u0646\u0649\u06ad \u0633\u06c8\u067e\u0649\u062a\u0649\u0646\u0649 \u064a\u06c7\u0642\u0649\u0631\u0649 \u0643\u06c6\u062a\u06c8\u0631\u06c8\u0634 \u0626\u06c8\u0686\u06c8\u0646 \u0626\u06d0\u0644\u0649\u067e \u0628\u06d0\u0631\u0649\u0644\u0649\u06cb\u0627\u062a\u0642\u0627\u0646 \u0626\u0649\u0643\u0643\u0649 \u0686\u0648\u06ad \u062a\u0649\u0631\u0649\u0634\u0686\u0627\u0646\u0644\u0649\u0642\u0646\u0649 \u062a\u0648\u0646\u06c7\u0634\u062a\u06c7\u0631\u062f\u0649. \u062a\u0648\u0631\u0628\u06d0\u0643\u06d5\u062a \u0628\u0627\u0631\u0644\u0649\u0642 \u0633\u06c6\u06be\u0628\u06d5\u062a\u0686\u0649\u0644\u06d5\u0631 \u0628\u0649\u0644\u06d5\u0646 \u0645\u0627\u0633\u0644\u0649\u0634\u0649\u067e \u067e\u0649\u0644\u0627\u0646\u0644\u0627\u0646\u063a\u0627\u0646.<\/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>\u0628\u0649\u0632\u0646\u0649\u06ad \u067e\u0627\u0646\u0627\u06be\u0644\u0627\u0646\u063a\u06c7\u0686\u0649\u0644\u0649\u0631\u0649\u0645\u0649\u0632 \u060c \u0626\u0627\u0632 \u0626\u06c7\u0686\u0631\u0627\u064a\u062f\u0649\u063a\u0627\u0646 \u062a\u06c7\u062a\u0642\u0627\u0642\u0644\u0649\u0642 \u0643\u06d0\u0633\u0649\u0644\u0649\u0646\u0649\u06ad \u0628\u0627\u0631\u0644\u0649\u0642 \u062c\u0649\u062f\u062f\u0649\u064a \u062a\u06d5\u0643\u0644\u0649\u067e\u0644\u0649\u0631\u0649:<\/strong><\/h3>\n\n\n\n<h3 class=\"has-normal-font-size wp-block-heading\"><em>\u0628\u0627\u0644\u0649\u0644\u0627\u0631 \u0643\u06d0\u0633\u06d5\u0644\u0644\u0649\u0643\u0644\u0649\u0631\u0649\u0646\u0649 \u062f\u0627\u06cb\u0627\u0644\u0627\u0634 \u0633\u0627\u063a\u0644\u0627\u0645\u0644\u0649\u0642 \u0633\u0649\u0633\u062a\u06d0\u0645\u0649\u0633\u0649 (PELHS) \u062f\u0649\u0646:<\/em><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Anup Patel <\/strong>- \u0626\u0648\u062e\u06d0\u0626\u0648 \u0634\u0649\u062a\u0627\u062a\u0644\u0649\u0642 \u0626\u06c7\u0646\u0649\u06cb\u06d0\u0631\u0633\u0649\u062a\u06d0\u062a \u062a\u06d0\u0628\u0628\u0649\u064a \u0626\u0649\u0646\u0649\u0633\u062a\u0649\u062a\u06c7\u062a\u0649 \u067e\u06c8\u062a\u06c8\u0646 \u0645\u06d5\u0645\u0644\u0649\u0643\u06d5\u062a\u062a\u0649\u0643\u0649 \u0628\u0627\u0644\u0649\u0644\u0627\u0631 \u0646\u06d0\u0631\u06cb\u0627 \u0643\u06d0\u0633\u06d5\u0644\u0644\u0649\u0643\u0644\u0649\u0631\u0649 \u0628\u06c6\u0644\u06c8\u0645\u0649\u0646\u0649\u06ad \u0628\u0627\u0634\u0644\u0649\u0642\u0649 \u06cb\u06d5 \u0643\u0644\u0649\u0646\u0649\u0643\u0649\u0644\u0649\u0642 \u0628\u0627\u0644\u0649\u0644\u0627\u0631 \u0643\u06d0\u0633\u06d5\u0644\u0644\u0649\u0643\u0644\u0649\u0631\u0649 \u06cb\u06d5 \u0646\u06d0\u0631\u06cb\u0627 \u0643\u06d0\u0633\u06d5\u0644\u0644\u0649\u0643\u0644\u0649\u0631\u0649 \u062f\u0648\u062a\u0633\u06d0\u0646\u062a\u0649<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Amy Zampi<\/strong> - 8 \u064a\u0627\u0634\u0644\u0649\u0642 \u0626\u06d0\u0645\u0645\u0627\u0646\u0649\u06ad \u0626\u0627\u062a\u0627-\u0626\u0627\u0646\u0649\u0633\u0649\u0645\u06c7 \u062a\u06c7\u062a\u0642\u0627\u0642\u0644\u0649\u0642 \u0643\u06d0\u0633\u0649\u0644\u0649\u06af\u06d5 \u06af\u0649\u0631\u0649\u067e\u062a\u0627\u0631 \u0628\u0648\u0644\u06c7\u067e \u0642\u0627\u0644\u0649\u062f\u06c7. \u0626\u0627\u0645\u0649\u064a 2012-\u064a\u0649\u0644\u0649 \u0628\u0649\u0645\u0627\u0631\u0644\u0627\u0631\u0646\u0649 \u062a\u06d5\u0634\u06d5\u0628\u0628\u06c7\u0633 \u0642\u0649\u0644\u0649\u0634 \u062e\u0649\u0632\u0645\u0649\u062a\u0649 \u0628\u0649\u0644\u06d5\u0646 \u0634\u06c7\u063a\u06c7\u0644\u0644\u0627\u0646\u063a\u0627\u0646 \u06cb\u06d5 \u0643\u06c6\u067e \u064a\u0649\u0644\u0644\u0627\u0631\u062f\u0649\u0646 \u0628\u06c7\u064a\u0627\u0646 \u06be\u06d5\u0631\u0642\u0627\u064a\u0633\u0649 \u0643\u0648\u0645\u0649\u062a\u06d0\u062a\u0644\u0627\u0631\u062f\u0627 \u062f\u0627\u06cb\u0627\u0645\u0644\u0649\u0642 \u062e\u0649\u0632\u0645\u06d5\u062a \u0642\u0649\u0644\u063a\u0627\u0646 \u060c \u06be\u0627\u0632\u0649\u0631 PELHS \u0646\u0649\u06ad \u0626\u0627\u062a\u0627-\u0626\u0627\u0646\u0649\u0633\u0649 \u06cb\u06d5\u0643\u0649\u0644\u0649. \u0626\u0627\u0645\u0649\u064a \u064a\u0648\u0644\u062f\u0649\u0634\u0649 \u06cb\u06d5 \u0626\u06c8\u0686 \u0628\u0627\u0644\u0649\u0633\u0649 \u0628\u0649\u0644\u06d5\u0646 MI \u0646\u0649\u06ad \u0626\u0627\u0646 \u0626\u0627\u0631\u0628\u0648\u0631\u062f\u0627 \u062a\u06c7\u0631\u0649\u062f\u06c7.<br><\/p>\n\n\n\n<h3 class=\"has-normal-font-size wp-block-heading\"><em>EPILEPSY \u0626\u06c6\u06af\u0649\u0646\u0649\u0634 \u0633\u0627\u063a\u0644\u0627\u0645\u0644\u0649\u0642 \u0633\u0649\u0633\u062a\u06d0\u0645\u0649\u0633\u0649 (ELHS) \u062f\u0649\u0646:<\/em><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Jeff Buchhalter<\/strong> - \u0628\u0627\u0644\u0649\u0644\u0627\u0631 \u062a\u06c7\u062a\u0642\u0627\u0642\u0644\u0649\u0642 \u0641\u0648\u0646\u062f\u0649 \u06cb\u06d5 \u0626\u0627\u0645\u06d0\u0631\u0649\u0643\u0627 \u062a\u06c7\u062a\u0642\u0627\u0642\u0644\u0649\u0642 \u0641\u0648\u0646\u062f\u0649\u0646\u0649\u06ad \u0645\u06d5\u0633\u0644\u0649\u06be\u06d5\u062a\u0686\u0649\u0633\u0649<br><br><strong>Nicole Murray<\/strong> - \u062a\u06c7\u062a\u0642\u0627\u0642\u0644\u0649\u0642 \u0643\u06d0\u0633\u0649\u0644\u0649\u06af\u06d5 \u06af\u0649\u0631\u0649\u067e\u062a\u0627\u0631 \u0628\u0648\u0644\u063a\u0627\u0646 \u0631\u0648\u0646\u0627\u0646\u0646\u0649\u06ad \u0626\u0627\u062a\u0627-\u0626\u0627\u0646\u0649\u0633\u0649 \u062a\u06c7\u062a\u0642\u0627\u0642\u0644\u0649\u0642 \u0641\u0648\u0646\u062f\u0649 \u062c\u06d5\u0645\u0626\u0649\u064a\u0649\u062a\u0649\u062f\u0649\u0643\u0649 \u0643\u0627\u0631\u062e\u0627\u0646\u0627 \u0633\u0627\u062e\u0627\u06cb\u06d5\u062a\u0686\u0649\u0633\u0649 \u06cb\u06d5 CHOP \u0628\u0649\u0645\u0627\u0631\u0644\u0627\u0631 \u0626\u0627\u0626\u0649\u0644\u06d5 \u06be\u06d5\u0645\u0631\u0627\u06be\u0649.<\/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 - \u0626\u0627\u0632 \u0626\u06c7\u0686\u0631\u0627\u064a\u062f\u0649\u063a\u0627\u0646 \u0628\u0627\u0644\u0649\u0644\u0627\u0631 \u062a\u06c7\u062a\u0642\u0627\u0642\u0644\u0649\u0642 \u0643\u06d0\u0633\u0649\u0644\u0649\u0646\u0649\u06ad \u0633\u06c8\u067e\u0649\u062a\u0649\u0646\u0649 \u064a\u06c7\u0642\u0649\u0631\u0649 \u0643\u06c6\u062a\u06c8\u0631\u06c8\u0634\" 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\">\u062a\u06d0\u062e\u0649\u0645\u06c7 \u0643\u06c6\u067e DEE \u0645\u06d5\u0646\u0628\u06d5\u0644\u0649\u0631\u0649 \u0626\u06c8\u0686\u06c8\u0646 \u0628\u0649\u0632\u0646\u0649\u06ad \u062a\u06d5\u0643\u0634\u06c8\u0631\u06c8\u06ad\u00a0<a href=\"https:\/\/deepconnections.net\/ug\/resource-center-main\/\">\u0628\u0627\u064a\u0644\u0649\u0642 \u0645\u06d5\u0631\u0643\u0649\u0632\u0649<\/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 v28.3) - 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\/ug\/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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