{"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\/de_at\/2020\/05\/29\/improving-the-quality-of-rare-childhood-epilepsy-care\/","title":{"rendered":"Verbesserung der Behandlungsqualit\u00e4t bei seltenen Epilepsieerkrankungen im Kindesalter"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Dieses Webinar zur Qualit\u00e4t der Pflege wurde von Gabrielle Conecker moderiert, der Mutter von Elliott, der an SCN8A-bedingter Epilepsie und schwerer DEE leidet, und Mitbegr\u00fcnderin von <a href=\"https:\/\/www.wishesforelliott.com\/\">W\u00fcnsche f\u00fcr Elliott <\/a>und DEE-P-Verbindungen.<\/p>\n\n\n\n<hr class=\"wp-block-separator\"\/>\n\n\n\n<p class=\"wp-block-paragraph\">Dies ist eine Aufzeichnung des DEE-P Connections-Webinars vom 27. Mai 2020 <em>\u201eVerbesserung der Qualit\u00e4t der Behandlung seltener Epilepsief\u00e4lle im Kindesalter\u201c <\/em>Hier wurden uns zwei gro\u00dfe laufende Bem\u00fchungen vorgestellt, die die Qualit\u00e4t der Epilepsieversorgung f\u00fcr Patienten mit schweren Entwicklungs- und epileptischen Enzephalopathien (DEEs) verbessern sollen. Das Webinar wurde in Abstimmung mit allen Diskussionsteilnehmern geplant.<\/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>Zu unseren Diskussionsteilnehmern, allesamt unerm\u00fcdliche F\u00fcrsprecher seltener Epilepsieerkrankungen, geh\u00f6rten:<\/strong><\/h3>\n\n\n\n<h3 class=\"has-normal-font-size wp-block-heading\"><em>VOM PEDIATRIC EPILEPSY LEARNING HEALTHCARE SYSTEM (PELHS):<\/em><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Anup Patel <\/strong>\u2013 Abteilungsleiter f\u00fcr p\u00e4diatrische Neurologie bei Nationwide Children&#039;s und au\u00dferordentlicher Professor f\u00fcr klinische P\u00e4diatrie und Neurologie am Ohio State University College of Medicine<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Amy Zampi<\/strong> \u2013 Mutter der 8-j\u00e4hrigen Emma, die zuf\u00e4llig auch Epilepsie hat. Amy begann 2012 in der Patientenvertretung zu arbeiten und war im Laufe der Jahre in verschiedenen Aussch\u00fcssen t\u00e4tig und ist derzeit Elternvertreterin f\u00fcr PELHS. Amy lebt mit ihrem Mann und drei Kindern in Ann Arbor, MI.<br><\/p>\n\n\n\n<h3 class=\"has-normal-font-size wp-block-heading\"><em>VOM EPILEPSY LEARNING HEALTHCARE SYSTEM (ELHS):<\/em><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Jeff Buchhalter<\/strong> \u2013 Kinderneurologe und Berater bei der Epilepsy Foundation of America<br><br><strong>Nicole Murray<\/strong> \u2013 Vater von Ronan, der an Epilepsie leidet; Corporate Philanthropy Officer bei der Epilepsy Foundation und CHOP Patient Family Partner.<\/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 - Verbesserung der Qualit\u00e4t der Behandlung seltener Epilepsieerkrankungen im Kindesalter\" 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\">Weitere DEE-Ressourcen finden Sie in unserem\u00a0<a href=\"https:\/\/deepconnections.net\/de_at\/resource-center-main\/\">Ressourcen-Center<\/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) - 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