{"id":6866,"date":"2021-02-26T13:06:53","date_gmt":"2021-02-26T13:06:53","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/02\/26\/feder-participa-en-la-jornada-sobre-enfermedades-raras-de-centogene\/"},"modified":"2021-02-26T13:06:53","modified_gmt":"2021-02-26T13:06:53","slug":"feder-participa-en-la-jornada-sobre-enfermedades-raras-de-centogene","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/02\/26\/feder-participa-en-la-jornada-sobre-enfermedades-raras-de-centogene\/","title":{"rendered":"FEDER participa en la Jornada sobre Enfermedades Raras de CENTOGENE"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Nuestra directora, Alba Ancochea, participar\u00e1 el pr\u00f3ximo domingo 28 en la jornada por el D\u00eda de las Enfermedades Raras organizada por CENTOGENE, compa\u00f1\u00eda especializada en el diagn\u00f3stico y la investigaci\u00f3n sobre enfermedades raras.<\/p>\n<p>Entre las 14hs y las 16hs, se desarrollar\u00e1 un evento en el que expertos internacionales debatir\u00e1n sobre los desaf\u00edos que enfrentan las personas que conviven con una enfermedad rara, especialmente en el contexto de la actual pandemia de COVID-19. Tras una breve bienvenida, Ancochea participar\u00e1 en la Mesa redonda La pandemia del COVID-19 y su impacto en pacientes con Enfermedades Raras, moderada por la Periodista Cient\u00edfica e Investigadora Christina Sartori.<\/p>\n<p>Junto a ella, compartir\u00e1n sus puntos de vista el Dr. Luca Sangiorgi, Coordinador de ERN BOND, Director del Departamento de Enfermedades del Esqueleto, Instituto Ortop\u00e9dico Rizzoli (Bolonia, Italia); Begonya Nafria Escalera, \u201cShare4 Rare\u201d, Coordinadora en Implicaci\u00f3n del Paciente en Investigaci\u00f3n, Hospital Sant Joan de D\u00e9u (Barcelona, Espa\u00f1a); y el Dr. Peter Bauer, Director de Gen\u00f3mica de CENTOGENE.<\/p>\n<p>Tras esta mesa redonda, se debatir\u00e1 sobre la Cooperaci\u00f3n Internacional en Enfermedades Raras,<br \/>poniendo el foco de atenci\u00f3n en Paquist\u00e1n, mesa a la que seguir\u00e1 el cierre del evento. A continuaci\u00f3n, se desarrollar\u00e1 el primer Festival Internacional de Cine de Enfermedades Raras desarrollado por esta compa\u00f1\u00eda, con la contribuci\u00f3n de 120 pa\u00edses.<\/p>\n<p>M\u00e1s informaci\u00f3n para participar en el evento pinchando aqu\u00ed:<\/p>\n<p>https:\/\/www.centogene.com\/index.php?&#038;ADMCMD_prev=a3ea330877a958dc75617af6b556825b&#038;id=2744&#038;L=2<\/p>\n<p>CENTOGENE se dedica al diagn\u00f3stico y la investigaci\u00f3n sobre enfermedades raras, transformando datos cl\u00ednicos y gen\u00e9ticos del mundo real en informaci\u00f3n procesable para pacientes, m\u00e9dicos y compa\u00f1\u00edas farmac\u00e9uticas. Esta compa\u00f1\u00eda ha desarrollado una plataforma mundial patentada de enfermedades raras basada en su repositorio de datos con m\u00e1s de 3.600 millones de puntos de datos ponderados de aproximadamente 595.000 pacientes que representan a m\u00e1s de 120 pa\u00edses diferentes, incluyendo datos epidemiol\u00f3gicos, fenot\u00edpicos y gen\u00e9ticos que reflejan una poblaci\u00f3n mundial, y tambi\u00e9n un biobanco de muestras de sangre de estos pacientes.<\/p>\n<p>\u00daltima actualizaci\u00f3n 26\/02\/2021<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/14974-feder-participa-en-la-jornada-sobre-enfermedades-raras-de-centogene\" target=\"_blank\" rel=\"noopener\">FEDER participa en la Jornada sobre Enfermedades Raras de CENTOGENE<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Nuestra directora, Alba Ancochea, participar\u00e1 el pr\u00f3ximo domingo 28 en la jornada por el D\u00eda de las Enfermedades Raras organizada por CENTOGENE, compa\u00f1\u00eda especializada en el diagn\u00f3stico y la investigaci\u00f3n sobre enfermedades raras. Entre las 14hs y las 16hs, se desarrollar\u00e1 un evento [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[8],"tags":[36],"class_list":["post-6866","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>FEDER participa en la Jornada sobre Enfermedades Raras de CENTOGENE - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/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:\/\/sindromecharge.es\/index.php\/2021\/02\/26\/feder-participa-en-la-jornada-sobre-enfermedades-raras-de-centogene\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"FEDER participa en la Jornada sobre Enfermedades Raras de CENTOGENE - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"og:description\" content=\"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Nuestra directora, Alba Ancochea, participar\u00e1 el pr\u00f3ximo domingo 28 en la jornada por el D\u00eda de las Enfermedades Raras organizada por CENTOGENE, compa\u00f1\u00eda especializada en el diagn\u00f3stico y la investigaci\u00f3n sobre enfermedades raras. 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