{"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\/fa_ir\/2020\/05\/29\/improving-the-quality-of-rare-childhood-epilepsy-care\/","title":{"rendered":"\u0628\u0647\u0628\u0648\u062f \u06a9\u06cc\u0641\u06cc\u062a \u0645\u0631\u0627\u0642\u0628\u062a \u062f\u0631 \u0635\u0631\u0639 \u0646\u0627\u062f\u0631 \u062f\u0648\u0631\u0627\u0646 \u06a9\u0648\u062f\u06a9\u06cc"},"content":{"rendered":"<p class=\"wp-block-paragraph\">\u0627\u06cc\u0646 \u0648\u0628\u06cc\u0646\u0627\u0631 \u06a9\u06cc\u0641\u06cc\u062a \u0645\u0631\u0627\u0642\u0628\u062a \u062a\u0648\u0633\u0637 \u06af\u0627\u0628\u0631\u06cc\u0644 \u06a9\u0627\u0646\u06a9\u0631\u060c \u0645\u0627\u062f\u0631 \u0627\u0644\u06cc\u0648\u062a \u06a9\u0647 \u062f\u0627\u0631\u0627\u06cc \u0635\u0631\u0639 \u0645\u0631\u062a\u0628\u0637 \u0628\u0627 SCN8A \u0648 DEE \u0634\u062f\u06cc\u062f \u0627\u0633\u062a\u060c \u0645\u062f\u06cc\u0631\u06cc\u062a \u0634\u062f \u0648 \u06cc\u06a9\u06cc \u0627\u0632 \u0628\u0646\u06cc\u0627\u0646\u06af\u0630\u0627\u0631\u0627\u0646 <a href=\"https:\/\/www.wishesforelliott.com\/\">\u0622\u0631\u0632\u0648\u0647\u0627 \u0628\u0631\u0627\u06cc \u0627\u0644\u06cc\u0648\u062a <\/a>\u0648 \u0627\u062a\u0635\u0627\u0644\u0627\u062a DEE-P.<\/p>\n\n\n\n<hr class=\"wp-block-separator\"\/>\n\n\n\n<p class=\"wp-block-paragraph\">\u0627\u06cc\u0646 \u0636\u0628\u0637 \u0648\u0628\u06cc\u0646\u0627\u0631 DEE-P Connections \u0627\u0632 27 \u0645\u06cc 2020 \u0627\u0633\u062a <em>&quot;\u0628\u0647\u0628\u0648\u062f \u06a9\u06cc\u0641\u06cc\u062a \u0645\u0631\u0627\u0642\u0628\u062a \u0647\u0627\u06cc \u0646\u0627\u062f\u0631 \u0635\u0631\u0639 \u06a9\u0648\u062f\u06a9\u0627\u0646&quot; <\/em>\u06a9\u0647 \u0645\u0627 \u0631\u0627 \u0628\u0627 \u062f\u0648 \u062a\u0644\u0627\u0634 \u0639\u0645\u062f\u0647 \u062f\u0631 \u062d\u0627\u0644 \u0627\u0646\u062c\u0627\u0645 \u0628\u0631\u0627\u06cc \u0628\u0647\u0628\u0648\u062f \u06a9\u06cc\u0641\u06cc\u062a \u0645\u0631\u0627\u0642\u0628\u062a \u0627\u0632 \u0635\u0631\u0639 \u0628\u0631\u0627\u06cc \u0645\u0628\u062a\u0644\u0627\u06cc\u0627\u0646 \u0628\u0647 \u0622\u0646\u0633\u0641\u0627\u0644\u0648\u067e\u0627\u062a\u06cc \u0647\u0627\u06cc \u0631\u0634\u062f\u06cc \u0648 \u0635\u0631\u0639\u06cc \u0634\u062f\u06cc\u062f (DEE) \u0622\u0634\u0646\u0627 \u06a9\u0631\u062f. \u0627\u06cc\u0646 \u0648\u0628\u06cc\u0646\u0627\u0631 \u0628\u0627 \u0647\u0645\u0627\u0647\u0646\u06af\u06cc \u062a\u0645\u0627\u0645 \u0627\u0639\u0636\u0627\u06cc \u067e\u0627\u0646\u0644 \u0628\u0631\u0646\u0627\u0645\u0647 \u0631\u06cc\u0632\u06cc \u0634\u062f.<\/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>\u067e\u0627\u0646\u0644\u06cc\u0633\u062a \u0647\u0627\u06cc \u0645\u0627\u060c \u0647\u0645\u0647 \u062d\u0627\u0645\u06cc\u0627\u0646 \u062e\u0633\u062a\u06af\u06cc \u0646\u0627\u067e\u0630\u06cc\u0631 \u0628\u0631\u0627\u06cc \u0635\u0631\u0639 \u0647\u0627\u06cc \u0646\u0627\u062f\u0631\u060c \u0634\u0627\u0645\u0644:<\/strong><\/h3>\n\n\n\n<h3 class=\"has-normal-font-size wp-block-heading\"><em>\u0627\u0632 \u0633\u06cc\u0633\u062a\u0645 \u0645\u0631\u0627\u0642\u0628\u062a \u0628\u0647\u062f\u0627\u0634\u062a\u06cc \u0622\u0645\u0648\u0632\u0634 \u0635\u0631\u0639 \u06a9\u0648\u062f\u06a9\u0627\u0646 (PELHS):<\/em><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u0622\u0646\u0648\u067e \u067e\u0627\u062a\u0644 <\/strong>- \u0631\u0626\u06cc\u0633 \u0628\u062e\u0634 \u0645\u063a\u0632 \u0648 \u0627\u0639\u0635\u0627\u0628 \u06a9\u0648\u062f\u06a9\u0627\u0646 \u062f\u0631 \u0633\u0631\u0627\u0633\u0631 \u06a9\u0634\u0648\u0631 \u0648 \u0627\u0633\u062a\u0627\u062f\u06cc\u0627\u0631 \u0627\u0637\u0641\u0627\u0644 \u0648 \u0646\u0648\u0631\u0648\u0644\u0648\u0698\u06cc \u0628\u0627\u0644\u06cc\u0646\u06cc \u062f\u0631 \u06a9\u0627\u0644\u062c \u067e\u0632\u0634\u06a9\u06cc \u062f\u0627\u0646\u0634\u06af\u0627\u0647 \u0627\u06cc\u0627\u0644\u062a\u06cc \u0627\u0648\u0647\u0627\u06cc\u0648<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u0627\u0645\u06cc \u0632\u0627\u0645\u067e\u06cc<\/strong> - \u067e\u062f\u0631 \u0648 \u0645\u0627\u062f\u0631 \u0627\u0650\u0645\u0627 8 \u0633\u0627\u0644\u0647 \u06a9\u0647 \u0627\u062a\u0641\u0627\u0642\u0627\u064b \u0635\u0631\u0639 \u0647\u0645 \u062f\u0627\u0631\u062f. \u0627\u0645\u06cc \u062f\u0631 \u0633\u0627\u0644 2012 \u06a9\u0627\u0631 \u062f\u0631 \u062d\u0645\u0627\u06cc\u062a \u0627\u0632 \u0628\u06cc\u0645\u0627\u0631 \u0631\u0627 \u0622\u063a\u0627\u0632 \u06a9\u0631\u062f \u0648 \u062f\u0631 \u0637\u0648\u0644 \u0633\u0627\u0644 \u0647\u0627 \u0628\u0647 \u062e\u062f\u0645\u062a \u062f\u0631 \u06a9\u0645\u06cc\u062a\u0647 \u0647\u0627\u06cc \u0645\u062e\u062a\u0644\u0641 \u0627\u062f\u0627\u0645\u0647 \u062f\u0627\u062f \u0648 \u062f\u0631 \u062d\u0627\u0644 \u062d\u0627\u0636\u0631 \u0628\u0647 \u0639\u0646\u0648\u0627\u0646 \u0646\u0645\u0627\u06cc\u0646\u062f\u0647 \u0648\u0627\u0644\u062f\u06cc\u0646 \u0628\u0631\u0627\u06cc PELHS. \u0627\u0645\u06cc \u0628\u0627 \u0634\u0648\u0647\u0631 \u0648 \u0633\u0647 \u0641\u0631\u0632\u0646\u062f\u0634 \u062f\u0631 \u0622\u0646 \u0622\u0631\u0628\u0648\u0631\u060c MI \u0632\u0646\u062f\u06af\u06cc \u0645\u06cc \u06a9\u0646\u062f.<br><\/p>\n\n\n\n<h3 class=\"has-normal-font-size wp-block-heading\"><em>\u0627\u0632 \u0633\u06cc\u0633\u062a\u0645 \u0645\u0631\u0627\u0642\u0628\u062a \u0628\u0647\u062f\u0627\u0634\u062a\u06cc \u06cc\u0627\u062f\u06af\u06cc\u0631\u06cc \u0635\u0631\u0639 (ELHS):<\/em><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u062c\u0641 \u0628\u0648\u06a9\u0647\u0627\u0644\u062a\u0631<\/strong> \u2013 \u0645\u062a\u062e\u0635\u0635 \u0645\u063a\u0632 \u0648 \u0627\u0639\u0635\u0627\u0628 \u06a9\u0648\u062f\u06a9\u0627\u0646 \u0648 \u0645\u0634\u0627\u0648\u0631 \u0628\u0646\u06cc\u0627\u062f \u0635\u0631\u0639 \u0622\u0645\u0631\u06cc\u06a9\u0627<br><br><strong>\u0646\u06cc\u06a9\u0648\u0644 \u0645\u0648\u0631\u06cc<\/strong> \u2013 \u0648\u0627\u0644\u062f\u06cc\u0646 \u0631\u0648\u0646\u0627\u0646 \u06a9\u0647 \u0645\u0628\u062a\u0644\u0627 \u0628\u0647 \u0635\u0631\u0639 \u0627\u0633\u062a. \u0645\u0633\u0626\u0648\u0644 \u0627\u0645\u0648\u0631 \u0628\u0634\u0631\u062f\u0648\u0633\u062a\u0627\u0646\u0647 \u062f\u0631 \u0628\u0646\u06cc\u0627\u062f \u0635\u0631\u0639 \u0648 \u0634\u0631\u06cc\u06a9 \u062e\u0627\u0646\u0648\u0627\u062f\u0647 \u0628\u06cc\u0645\u0627\u0631 CHOP.<\/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 - \u0628\u0647\u0628\u0648\u062f \u06a9\u06cc\u0641\u06cc\u062a \u0645\u0631\u0627\u0642\u0628\u062a \u0647\u0627\u06cc \u0646\u0627\u062f\u0631 \u0635\u0631\u0639 \u062f\u0648\u0631\u0627\u0646 \u06a9\u0648\u062f\u06a9\u06cc\" 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\">\u0628\u0631\u0627\u06cc \u0645\u0646\u0627\u0628\u0639 \u0628\u06cc\u0634\u062a\u0631 DEE\u060c \u0645\u0627 \u0631\u0627 \u0628\u0631\u0631\u0633\u06cc \u06a9\u0646\u06cc\u062f\u00a0<a href=\"https:\/\/deepconnections.net\/fa_ir\/resource-center-main\/\">\u0645\u0631\u06a9\u0632 \u0645\u0646\u0627\u0628\u0639<\/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 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