{"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\/nl\/2020\/10\/rarefest20\/","title":{"rendered":"RAREfest20"},"content":{"rendered":"<h1 style=\"text-align: center;\">RAREfest20: Wereldwijd, virtueel festival zet zeldzame ziekten in de spotlight!<\/h1>\n<p style=\"text-align: center;\">BEWAAR DE DATUM: 28 november 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>Ondanks het feit dat zeldzame ziekten \u00e9\u00e9n op de zeventien mensen treffen, vertellen de getroffenen aan Cambridge Rare Disease Network dat ze de afgelopen zes maanden van de COVID-19-pandemie zo goed als vergeten zijn. Met dit in gedachten maakt CRDN het tot hun prioriteit om zeldzame ziekten in de schijnwerpers te zetten. We zijn er trots op mediapartners te zijn voor dit belangrijke evenement op de kalender voor zeldzame ziekten.<\/p>\n<p>RAREfest20 is een virtueel, wereldwijd festival dat nieuwsgierigheid opwekt, percepties uitdaagt, wetenschap onder de aandacht brengt, innovatie inspireert en een stem geeft aan pati\u00ebnten met zeldzame ziekten en hun families. Dit GRATIS evenement voor de experts en nieuwsgierigen van alle leeftijden, dat plaatsvindt op 28 november, belooft een feest van uitstekende sprekers, exposanten, films, deskundige lezingen en geduldige stemmen. Een geweldige kans om kennis te maken met de gemeenschap van zeldzame ziekten via live Q&amp;A en chatrooms.<\/p>\n<p>Hoogtepunten van de spreker zijn onder meer:<\/p>\n<ul style=\"list-style-type: square;\">\n<li><strong>Onno Faber<\/strong> \u2013 Zeldzame ziektepati\u00ebnt, techgoeroe, ondernemer en keynote spreker. Oprichter van All Stripes (voorheen) RDMD, die gemeenschappen met zeldzame ziekten helpt belangrijke onderzoeksgegevens te ontsluiten.<\/li>\n<li><strong>Giles Yeo<\/strong> \u2013 Dr. Giles Yeo bestudeert zwaarlijvigheid, hij liep voorop in onderzoek dat aantoonde dat wanneer een aantal genen muteerden, ernstige zwaarlijvigheid het gevolg was. Voor RAREfest20 vertelt hij over genetica, obesitas en hoe onderzoek naar zeldzame aandoeningen een universele weg biedt naar het begrijpen van veelvoorkomende aandoeningen.<\/li>\n<li><strong>Illumina<\/strong> en <strong>Hetzelfde maar anders<\/strong> \u2013 &#039;Illumina&#039; is een wereldleider in sequencing van de volgende generatie. &#039;Same but Different&#039; gebruikt kunst voor positieve sociale verandering. Samen presenteren ze &#039;The Journey of Hope: Exploring the diagnostic odyssey&#039;.<\/li>\n<li><strong>Cookies4Cures<\/strong> \u2013 Het in de VS gevestigde moeder- en dochterteam bakken koekjes om onderzoek naar zeldzame kinderziekten te helpen financieren. Koekjes gebakken: bijna 16.000. Ingezameld geld: meer dan $100,000!<\/li>\n<li><strong>Zeldzame jeugdrevolutie<\/strong> \u2013 Een speciaal nieuwsplatform voor jongeren om toegang te krijgen tot relevante content over zeldzame ziekten. Voor RAREfest20 zullen de teams een workshop en quiz leiden<\/li>\n<\/ul>\n\n<p>RAREfest20 is een publieksgericht festival voor experts en nieuwsgierigen van alle leeftijden. Voor de gemeenschap van zeldzame ziekten maakt online gaan dit festival nog toegankelijker. Degenen die hebben afgeschermd, kunnen er zijn. Degenen die misschien moeite hebben om naar een fysiek evenement te reizen, kunnen meedoen. Degenen die vanwege hun medische behoeften het bijwonen kunnen verhinderen, kunnen meedoen en deelnemen. Niet alleen dit, maar door RAREfest20 online te nemen, kan het een echt wereldwijd evenement worden waar iedereen ter wereld aanwezig kan zijn!<\/p>\n<p>Voor meer informatie bezoek het festival <a href=\"https:\/\/www.camraredisease.org\/rarefest20\/\">website<\/a>. Tickets zijn gratis en verkrijgbaar via het platform <a href=\"https:\/\/www.camraredisease.org\/rarefest20\/\">hier<\/a>.<\/p>","protected":false},"excerpt":{"rendered":"<p>Ondanks het feit dat zeldzame ziekten \u00e9\u00e9n op de zeventien mensen treffen, vertellen de getroffenen aan Cambridge Rare Disease Network dat ze de afgelopen zes maanden van de COVID-19-pandemie zo goed als vergeten zijn.<\/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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