{"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\/fr_ca\/2020\/05\/29\/improving-the-quality-of-rare-childhood-epilepsy-care\/","title":{"rendered":"Am\u00e9liorer la qualit\u00e9 des soins dans l&#039;\u00e9pilepsie infantile rare"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Ce webinaire sur la qualit\u00e9 des soins a \u00e9t\u00e9 anim\u00e9 par Gabrielle Conecker, m\u00e8re d&#039;Elliott qui souffre d&#039;\u00e9pilepsie li\u00e9e au SCN8A et de DEE s\u00e9v\u00e8re, et est co-fondatrice de <a href=\"https:\/\/www.wishesforelliott.com\/\">V\u0153ux pour Elliott <\/a>et connexions DEE-P.<\/p>\n\n\n\n<hr class=\"wp-block-separator\"\/>\n\n\n\n<p class=\"wp-block-paragraph\">Ceci est un enregistrement du webinaire DEE-P Connections du 27 mai 2020. <em>\u00ab\u00a0Am\u00e9liorer la qualit\u00e9 des soins pour l&#039;\u00e9pilepsie infantile rare\u00a0\u00bb <\/em>qui nous a pr\u00e9sent\u00e9 deux efforts majeurs en cours pour am\u00e9liorer la qualit\u00e9 des soins li\u00e9s \u00e0 l&#039;\u00e9pilepsie pour les personnes atteintes d&#039;enc\u00e9phalopathies d\u00e9veloppementales et \u00e9pileptiques (DEE) s\u00e9v\u00e8res. Le webinaire a \u00e9t\u00e9 planifi\u00e9 en coordination avec tous les pan\u00e9listes.<\/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>NOS PAN\u00c9LISTES, TOUS DES D\u00c9FENDEURS INFAILLABLES DES \u00c9PILEPSIES RARES, COMPRENNENT\u00a0:<\/strong><\/h3>\n\n\n\n<h3 class=\"has-normal-font-size wp-block-heading\"><em>DU SYST\u00c8ME DE SANT\u00c9 D&#039;APPRENTISSAGE SUR L&#039;\u00c9PILEPSIE P\u00c9DIATRIQUE (PELHS)\u00a0:<\/em><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Anup Patel <\/strong>\u2013 Chef de section de neurologie p\u00e9diatrique au Nationwide Children&#039;s et professeur agr\u00e9g\u00e9 de p\u00e9diatrie clinique et de neurologie \u00e0 l&#039;Ohio State University College of Medicine<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Amy Zampi<\/strong> \u2013 parent d&#039;Emma, 8 ans, qui souffre \u00e9galement d&#039;\u00e9pilepsie. Amy a commenc\u00e9 \u00e0 travailler dans le domaine de la d\u00e9fense des droits des patients en 2012 et a continu\u00e9 \u00e0 si\u00e9ger \u00e0 divers comit\u00e9s au fil des ans et actuellement en tant que repr\u00e9sentante des parents pour le PELHS. Amy vit avec son mari et ses trois enfants \u00e0 Ann Arbor, Michigan.<br><\/p>\n\n\n\n<h3 class=\"has-normal-font-size wp-block-heading\"><em>DU SYST\u00c8ME DE SANT\u00c9 D&#039;APPRENTISSAGE SUR L&#039;\u00c9PILEPSIE (ELHS)\u00a0:<\/em><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Jeff Buchhalter<\/strong> \u2013 Neurologue p\u00e9diatrique et consultant aupr\u00e8s de l\u2019Epilepsy Foundation of America<br><br><strong>Nicole Murray<\/strong> \u2013 parent de Ronan, qui souffre d&#039;\u00e9pilepsie ; Responsable de la philanthropie d&#039;entreprise \u00e0 la Fondation Epilepsy et partenaire de la famille des patients 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 - Am\u00e9liorer la qualit\u00e9 des soins pour l&#039;\u00e9pilepsie infantile rare\" 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\">Pour plus de ressources DEE, consultez notre\u00a0<a href=\"https:\/\/deepconnections.net\/resource-center-main\/\">centre de ressources<\/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 v28.4) - 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