{"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\/pt\/2020\/10\/rarefest20\/","title":{"rendered":"RAREfest20"},"content":{"rendered":"<h1 style=\"text-align: center;\">RAREfest20: Festival virtual global que destaca as doen\u00e7as raras!<\/h1>\n<p style=\"text-align: center;\">SALVE A DATA: 28 de novembro 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>Apesar do fato de as doen\u00e7as raras afetarem uma em cada dezessete pessoas, as pessoas afetadas dizem \u00e0 Cambridge Rare Disease Network que foram praticamente esquecidas durante os \u00faltimos seis meses da pandemia do COVID-19. Com isso em mente, o CRDN tem como prioridade colocar as doen\u00e7as raras no centro das aten\u00e7\u00f5es. Temos orgulho de ser parceiros de m\u00eddia para este importante evento no calend\u00e1rio de doen\u00e7as raras.<\/p>\n<p>O RAREfest20 \u00e9 um festival virtual global inspirado em doen\u00e7as raras que despertar\u00e1 curiosidade, desafiar\u00e1 percep\u00e7\u00f5es, mostrar\u00e1 ci\u00eancia, inspirar\u00e1 inova\u00e7\u00e3o e dar\u00e1 voz a pacientes com doen\u00e7as raras e suas fam\u00edlias. Acontecendo em 28 de novembro, este evento GRATUITO para especialistas e curiosos de todas as idades promete um banquete de excelentes palestrantes, expositores, filmes, palestras de especialistas e vozes de pacientes. Uma grande oportunidade de se misturar com a comunidade de doen\u00e7as raras por meio de perguntas e respostas ao vivo e salas de bate-papo.<\/p>\n<p>Os destaques do palestrante incluem:<\/p>\n<ul style=\"list-style-type: square;\">\n<li><strong>Onno Faber<\/strong> \u2013 Paciente com doen\u00e7as raras, guru da tecnologia, empres\u00e1rio e palestrante principal. Fundador do All Stripes (anteriormente) RDMD, ajudando comunidades de doen\u00e7as raras a desvendar importantes dados de pesquisa.<\/li>\n<li><strong>Giles Yeo<\/strong> \u2013 O Dr. Giles Yeo estuda a obesidade, ele estava na vanguarda da pesquisa que mostrou quando uma s\u00e9rie de genes mutados, obesidade severa foi o resultado. Para o RAREfest20, ele fala sobre gen\u00e9tica, obesidade e como a pesquisa sobre condi\u00e7\u00f5es raras fornece um caminho universal para a compreens\u00e3o de condi\u00e7\u00f5es comuns.<\/li>\n<li><strong>Illumina<\/strong> e <strong>Igual, mas diferente<\/strong> \u2013 &#039;Illumina&#039; \u00e9 l\u00edder mundial em sequenciamento de pr\u00f3xima gera\u00e7\u00e3o. &#039;Same but Different&#039; usa as artes para uma mudan\u00e7a social positiva. Juntos, eles apresentar\u00e3o &#039;A Jornada da Esperan\u00e7a: Explorando a odiss\u00e9ia diagn\u00f3stica&#039;.<\/li>\n<li><strong>Cookies4Curas<\/strong> \u2013 M\u00e3e e filha sediadas nos Estados Unidos fazem biscoitos para ajudar a financiar pesquisas sobre doen\u00e7as pedi\u00e1tricas raras. Biscoitos assados: Quase 16.000. Dinheiro arrecadado: Mais de $100.000!<\/li>\n<li><strong>Rara revolu\u00e7\u00e3o da juventude<\/strong> \u2013 Uma plataforma de not\u00edcias dedicada para jovens acessarem conte\u00fados relevantes sobre doen\u00e7as raras. Para o RAREfest20, as equipes conduzir\u00e3o um workshop e um quiz<\/li>\n<\/ul>\n\n<p>O RAREfest20 \u00e9 um festival aberto ao p\u00fablico para especialistas e curiosos de todas as idades. Para a comunidade de doen\u00e7as raras, ficar online torna este festival ainda mais acess\u00edvel. Aqueles que estiveram protegendo podem estar l\u00e1. Aqueles que podem ter dificuldades para viajar para um evento f\u00edsico podem participar. Aqueles cujas necessidades m\u00e9dicas podem impedi-los de comparecer podem se envolver e participar. N\u00e3o apenas isso, mas levar o RAREfest20 online permite que ele seja um evento verdadeiramente global, onde qualquer pessoa no mundo pode participar!<\/p>\n<p>Para mais informa\u00e7\u00f5es visite o festival <a href=\"https:\/\/www.camraredisease.org\/rarefest20\/\">local na rede Internet<\/a>. Os ingressos s\u00e3o gratuitos e est\u00e3o dispon\u00edveis na plataforma <a href=\"https:\/\/www.camraredisease.org\/rarefest20\/\">aqui<\/a>.<\/p>","protected":false},"excerpt":{"rendered":"<p>Apesar do fato de as doen\u00e7as raras afetarem uma em cada dezessete pessoas, as pessoas afetadas dizem \u00e0 Cambridge Rare Disease Network que foram praticamente esquecidas durante os \u00faltimos seis meses da pandemia do 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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