{"id":2497,"date":"2020-10-12T15:27:08","date_gmt":"2020-10-12T15:27:08","guid":{"rendered":"https:\/\/ring20researchsupport.co.uk\/?p=2497"},"modified":"2023-02-10T08:54:38","modified_gmt":"2023-02-10T08:54:38","slug":"rarefest20","status":"publish","type":"post","link":"https:\/\/ring20researchsupport.co.uk\/es\/2020\/10\/rarefest20\/","title":{"rendered":"RAREfest20"},"content":{"rendered":"<h1 style=\"text-align: center;\">RAREfest20: \u00a1Festival virtual global que pone las enfermedades raras en el centro de atenci\u00f3n!<\/h1>\n<p style=\"text-align: center;\">RESERVE LA FECHA: 28 de noviembre de 2020<\/p>\n<p style=\"text-align: center;\"><img decoding=\"async\" class=\"size-medium wp-image-2500\" src=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2020\/10\/RF20-horz-with-tagline-1-300x126.png\" alt=\"RF20 horz with tagline (1)\" width=\"300\" height=\"126\"><\/p>\n<p>A pesar de que las enfermedades raras afectan a una de cada diecisiete personas, los afectados le dicen a Cambridge Rare Disease Network que han sido olvidados durante los \u00faltimos seis meses de la pandemia de COVID-19. Con esto en mente, CRDN est\u00e1 dando prioridad a poner las enfermedades raras en el centro de atenci\u00f3n. Estamos orgullosos de ser socios de medios para este importante evento en el calendario de enfermedades raras.<\/p>\n<p>RAREfest20 es un festival mundial virtual inspirado en enfermedades raras que despertar\u00e1 la curiosidad, desafiar\u00e1 las percepciones, exhibir\u00e1 la ciencia, inspirar\u00e1 la innovaci\u00f3n y dar\u00e1 voz a los pacientes con enfermedades raras y sus familias. Este evento GRATUITO para expertos y curiosos de todas las edades, que tendr\u00e1 lugar el 28 de noviembre, promete un fest\u00edn de excelentes oradores, exhibidores, pel\u00edculas, charlas de expertos y voces pacientes. Una gran oportunidad para relacionarse con la comunidad de enfermedades raras a trav\u00e9s de salas de chat y preguntas y respuestas en vivo.<\/p>\n<p>Los puntos destacados de los oradores incluyen:<\/p>\n<ul style=\"list-style-type: square;\">\n<li><strong>onno faber<\/strong> \u2013 Paciente de enfermedades raras, gur\u00fa de la tecnolog\u00eda, emprendedor y orador principal. Fundador de All Stripes (anteriormente) RDMD, ayudando a las comunidades de enfermedades raras a desbloquear datos de investigaci\u00f3n importantes.<\/li>\n<li><strong>giles yeo<\/strong> \u2013 El Dr. Giles Yeo estudia la obesidad, estuvo a la vanguardia de la investigaci\u00f3n que mostr\u00f3 que cuando varios genes mutaban, el resultado era una obesidad severa. Para RAREfest20, habla sobre gen\u00e9tica, obesidad y c\u00f3mo la investigaci\u00f3n de enfermedades raras proporciona un camino universal para comprender las enfermedades comunes.<\/li>\n<li><strong>Ilumina<\/strong> y <strong>Lo mismo pero diferente<\/strong> \u2013 &#039;Illumina&#039; es l\u00edder mundial en secuenciaci\u00f3n de pr\u00f3xima generaci\u00f3n. &#039;Same but Different&#039; utiliza las artes para un cambio social positivo. Juntos presentar\u00e1n &#039;El viaje de la esperanza: explorando la odisea del diagn\u00f3stico&#039;.<\/li>\n<li><strong>Cookies4Curas<\/strong> \u2013 El equipo de madre e hija con sede en EE. UU. hornean galletas para ayudar a financiar la investigaci\u00f3n de enfermedades pedi\u00e1tricas raras. Galletas horneadas: Casi 16.000. Dinero recaudado: \u00a1M\u00e1s de $100,000!<\/li>\n<li><strong>Revoluci\u00f3n juvenil rara<\/strong> \u2013 Una plataforma de noticias dedicada para que los j\u00f3venes accedan a contenido relevante sobre enfermedades raras. Para RAREfest20, los equipos dirigir\u00e1n un taller y un cuestionario.<\/li>\n<\/ul>\n\n<p>RAREfest20 es un festival p\u00fablico para expertos y curiosos de todas las edades. Para la comunidad de enfermedades raras, conectarse en l\u00ednea hace que este festival sea a\u00fan m\u00e1s accesible. Los que se han estado protegiendo pueden estar all\u00ed. Aquellos que tengan dificultades para viajar a un evento f\u00edsico pueden unirse. Aquellos cuyas necesidades m\u00e9dicas les impidan asistir pueden participar. \u00a1No solo esto, sino que llevar RAREfest20 en l\u00ednea permite que sea un evento verdaderamente global al que puede asistir cualquier persona en el mundo!<\/p>\n<p>Para m\u00e1s informaci\u00f3n visita el festival <a href=\"https:\/\/www.camraredisease.org\/rarefest20\/\">sitio web<\/a>. Las entradas son gratuitas y est\u00e1n disponibles a trav\u00e9s de la plataforma. <a href=\"https:\/\/www.camraredisease.org\/rarefest20\/\">aqu\u00ed<\/a>.<\/p>","protected":false},"excerpt":{"rendered":"<p>A pesar de que las enfermedades raras afectan a una de cada diecisiete personas, los afectados le dicen a Cambridge Rare Disease Network que han sido olvidados durante los \u00faltimos seis meses de la pandemia de COVID-19.<\/p>","protected":false},"author":3,"featured_media":4114,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"default","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":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"default","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":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[42],"tags":[],"class_list":["post-2497","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - 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