{"id":3342,"date":"2021-08-12T16:53:22","date_gmt":"2021-08-12T23:53:22","guid":{"rendered":"https:\/\/deepconnections.net\/?page_id=3342"},"modified":"2026-02-02T16:20:02","modified_gmt":"2026-02-02T21:20:02","slug":"partner-with-us","status":"publish","type":"page","link":"https:\/\/deepconnections.net\/es_cr\/partner-with-us\/","title":{"rendered":"As\u00f3ciese con nosotros"},"content":{"rendered":"<p>DEE-P Connections est\u00e1 trabajando para mejorar el apoyo a las familias de ni\u00f1os con encefalopat\u00edas epil\u00e9pticas y del desarrollo (EED) graves<\/p>\n<p><strong>Trabajamos para:<\/strong><\/p>\n<ul>\n<li>Ofrecer seminarios web peri\u00f3dicos sobre cuestiones espec\u00edficamente relevantes para las EDE graves.<\/li>\n<li>Proporcionar un centro de recursos en l\u00ednea consolidado para incluir seminarios web grabados y los mejores materiales disponibles sobre temas relevantes para las EDE graves.<\/li>\n<\/ul>\n<h3><strong>Compromiso del DEE-P con asociaciones de colaboraci\u00f3n<\/strong><\/h3>\n<p>El Proyecto DEE est\u00e1 dise\u00f1ado para proporcionar informaci\u00f3n y recursos a una comunidad m\u00e1s amplia de familias que enfrentan EED graves aprovechando y complementando las iniciativas de organizaciones existentes de epilepsia rara. El esfuerzo se estructurar\u00e1, gestionar\u00e1 y organizar\u00e1 para fortalecer y ampliar el apoyo que las organizaciones existentes pueden brindar a sus comunidades. Ocho grupos de defensa de pacientes son los socios fundadores y trabajan juntos para construir esta iniciativa, compartiendo recursos, conocimientos y experiencias. \u00danase a nosotros como colaborativo.<\/p>\n<h3><strong><\/strong><strong>Beneficios para los grupos existentes de enfermedades raras<\/strong><\/h3>\n<figure><img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/08\/Jake1.jpg\" alt=\"\" width=\"250\" height=\"250\" \/><\/figure>\n<p>This approach seeks to reduce this populations&#8217; isolation by providing a comprehensive and accessible online resource for families across the rare epilepsies who experience many similar challenges. This resource should serve <em>ambos <\/em>Hay pocas organizaciones dedicadas a la epilepsia que ya est\u00e1n brindando informaci\u00f3n muy \u00fatil a estas familias, pero en una forma m\u00e1s consolidada, as\u00ed como organizaciones m\u00e1s nuevas con capacidad m\u00e1s limitada para brindar recursos diversos. Las poblaciones obtienen m\u00e1s y mejor informaci\u00f3n, los recursos existentes se difunden m\u00e1s ampliamente y se reduce la necesidad de muchos esfuerzos similares duplicados y costosos.<\/p>\n<p>Si bien no es el enfoque inicial de este esfuerzo, este esfuerzo colaborativo puede prometer eficiencias y nuevas direcciones en la investigaci\u00f3n. La investigaci\u00f3n transversal sobre fenotipos graves en todas las etiolog\u00edas podr\u00eda presentar una v\u00eda inexplorada para el desarrollo potencial de tratamientos y estrategias para mejorar la calidad de vida de los ni\u00f1os m\u00e1s gravemente afectados en una variedad de epilepsias raras.<\/p>\n<h3><strong><\/strong><strong><\/strong><strong>C\u00f3mo las organizaciones asociadas pueden apoyar esta iniciativa<\/strong><\/h3>\n<ul>\n<li>Anuncie el recurso DEE-P Connections a su comunidad y comparta notificaciones de pr\u00f3ximos seminarios web<\/li>\n<li>Share and help identify existing materials your organization has developed for inclusion in the resource center (they will be properly attributed to your organization and linked back to your website or wherever they &#8220;live&#8221;)<\/li>\n<li>Comparta el tiempo del personal\/miembros expertos para planificar\/codirigir un seminario web<\/li>\n<\/ul>\n<figure><img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/08\/DEE-Plaunchcropped.png\" alt=\"\" width=\"563\" height=\"422\" \/><\/figure>\n<h1><strong><\/strong><strong><\/strong><strong>Socios actuales<\/strong><\/h1>\n<p><strong><a href=\"https:\/\/deepconnections.net\/es_cr\/contact\/\" target=\"_blank\" rel=\"noreferrer noopener\">Si est\u00e1 interesado en convertirse en socio de DEE-P, \u00a1est\u00e9 en contacto!<\/a><\/strong><\/p>\n\t<h2><strong>\u00a1Tambi\u00e9n hemos estado construyendo asociaciones estrat\u00e9gicas para brindarles a nuestras familias DEE una amplia variedad de recursos \u00fatiles!<\/strong><\/h2>","protected":false},"excerpt":{"rendered":"<p>DEE-P Connections is working to enhance support for families of children with severe Developmental &amp; Epileptic Encephalopathies (DEEs) We work to: Offer periodic webinars on issues specifically relevant to severe&hellip;<\/p>","protected":false},"author":4,"featured_media":2262,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","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":""},"class_list":["post-3342","page","type-page","status-publish","has-post-thumbnail","hentry"],"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>Partner With Us - DEE-P Information Resource Center<\/title>\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\/es_cr\/partner-with-us\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Partner With Us\" \/>\n<meta property=\"og:description\" content=\"DEE-P Connections is working to enhance support for families of children with severe Developmental &amp; 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