{"id":791,"date":"2022-02-24T18:21:19","date_gmt":"2022-02-24T18:21:19","guid":{"rendered":"https:\/\/sleepconsort.wpengine.com\/?page_id=791"},"modified":"2022-04-13T18:29:32","modified_gmt":"2022-04-13T18:29:32","slug":"core-values","status":"publish","type":"page","link":"https:\/\/sleepconsortium.org\/es\/core-values\/","title":{"rendered":"Valores fundamentales"},"content":{"rendered":"
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Valores fundamentales<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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En Sleep Consortium, nuestros principios fundacionales se basan en:<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Equidad <\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Nuestro enfoque de la equidad se centra en la inclusi\u00f3n de todas las poblaciones infrarrepresentadas y a las que no se ha llegado en todo el mundo, en m\u00faltiples \u00e1mbitos de enfermedades y en todos los bolsillos de la sociedad. Por experiencia personal y profesional, sabemos lo urgente que es abordar los complejos procesos de diagn\u00f3stico y el acceso a la atenci\u00f3n sanitaria y los medicamentos adecuados, luchar con las compa\u00f1\u00edas de seguros y proporcionar una atenci\u00f3n \u00f3ptima a nuestros seres queridos: que todo el mundo, independientemente de su edad, sexo, identidad o situaci\u00f3n socioecon\u00f3mica, tenga derecho a un diagn\u00f3stico r\u00e1pido y a elegir las modalidades de tratamiento \u00f3ptimas.\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Abordar las incongruencias en materia de discapacidad, cultura, ingresos, discordancias ling\u00fc\u00edsticas y acceso desfavorecido a la atenci\u00f3n sanitaria es el n\u00facleo de lo que pretendemos conseguir.<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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El Consorcio del Sue\u00f1o tiene como objetivo elevar la equidad, liderar la inclusi\u00f3n, practicar el intercambio \u00e9tico de datos, mantener la centralidad del paciente, aliviar la carga de las familias e implementar colaboraciones productivas con urgencia, ingenio y reconocimiento del impacto de la enfermedad en las relaciones interpersonales, la econom\u00eda y la salud mental y emocional. En el marco del Consorcio, todos los socios y colaboradores con los que nos comprometemos se alinean con esta creencia fundamental a trav\u00e9s de nuestra visi\u00f3n compartida con RARE-X.\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Accesibilidad <\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Creemos que el camino para acelerar la comprensi\u00f3n de los Trastornos Centrales de Hipersomnolencia se basa en proporcionar un amplio acceso a pacientes, cl\u00ednicos, investigadores, instituciones de investigaci\u00f3n y socios de la industria. La recogida de datos de los registros y repositorios existentes y los nuevos datos cargados en el portal se recopilar\u00e1n, conectar\u00e1n y compartir\u00e1n en funci\u00f3n de las preferencias de los pacientes. En este sentido, los datos compartidos estar\u00e1n sujetos al consentimiento de los pacientes y las partes interesadas. Los pacientes conservar\u00e1n los derechos exclusivos sobre sus datos, podr\u00e1n retirarlos del portal en cualquier momento y recibir\u00e1n informaci\u00f3n actualizada dentro de la comunidad investigadora, as\u00ed como alertas sobre pr\u00f3ximos ensayos cl\u00ednicos y nuevas terapias.\u00a0<\/p>

Los datos proporcionados por los pacientes a trav\u00e9s del portal no se compran, comercializan ni son propiedad del Consorcio del Sue\u00f1o ni de ninguna organizaci\u00f3n afiliada.\u00a0<\/strong><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Colaboraci\u00f3n <\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
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Como consorcio, facilitamos diversas plataformas que fomentan la colaboraci\u00f3n interna y externa entre m\u00faltiples partes interesadas. Esto se demuestra en nuestro compromiso con los grupos de defensa de los pacientes, en nuestro consejo asesor corporativo y en nuestro apoyo a organizaciones del \u00e1mbito de las enfermedades raras y no raras a nivel estatal y federal. Entendemos nuestro papel como conectores, no s\u00f3lo de datos, sino tambi\u00e9n de personas, comunidades y pa\u00edses.\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Adaptabilidad<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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En este mundo de incertidumbre, identificamos la necesidad de permanecer atentos y sensibles a la evoluci\u00f3n global, local e individual. Disponer de una infraestructura segura en el Consorcio del Sue\u00f1o y de un equipo, una junta directiva y una serie de socios cient\u00edficos de primer orden, nos ofrece espacio para la adaptaci\u00f3n y, en caso necesario, la reorientaci\u00f3n. Ser pioneros en una nueva plataforma de recopilaci\u00f3n de datos para personas afectadas por trastornos del sue\u00f1o conlleva la necesidad de atenci\u00f3n, flexibilidad y reconocimiento de los retos y cambios a los que todos nos enfrentamos. El equipo directivo entiende que los avances m\u00e9dicos son imposibles sin cambios, y que el poder de escuchar, cuestionar, buscar la comprensi\u00f3n y pivotar a la luz de la nueva informaci\u00f3n es la base del progreso humano.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Core Values At Sleep Consortium, our founding principles are based on: Equity Our approach to equity focuses on inclusion of all under-represented and un-reached populations globally, across multiple disease spaces, and in every pocket of society. From personal and professional experience, we know how urgent the need is to address complex diagnostic journeys and access […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"inline_featured_image":false,"site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center 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