CIBERER<\/a><\/span> | El Sal\u00f3n de actos del CaixaForum Madrid acoger\u00e1 la octava edici\u00f3n de la Jornada \u00abInvestigar es avanzar\u00bb del CIBERER el pr\u00f3ximo 28 de febrero, D\u00eda Mundial de las Enfermedades Raras. Investigadores del centro y representantes de las personas afectadas expondr\u00e1n su colaboraci\u00f3n en la b\u00fasqueda de diagn\u00f3sticos y nuevas terapias. Durante el encuentro, se estrenar\u00e1n dos v\u00eddeos cortos producidos por el CIBERER sobre casos de colaboraci\u00f3n de \u00e9xito.<\/p>\nEn la primera parte de este encuentro, moderada por Carmen Ayuso (U704 CIBERER), se explicar\u00e1 el trabajo que realiza el CIBERER para las personas con enfermedades raras. Pablo Lapunzina, Director Cient\u00edfico del centro, ofrecer\u00e1 una visi\u00f3n general sobre la investigaci\u00f3n.<\/p>\n
A continuaci\u00f3n, se abordar\u00e1n las enfermedades raras no diagnosticadas, con la perspectiva de un paciente y la de Beatriz Morte, Gestora del proyecto de \u201cEnfermedades Raras No Diagnosticadas (ENoD)\u201c del CIBERER.<\/p>\n
Posteriormente, Juan Luque, Gestor Cient\u00edfico del CIBERER, expondr\u00e1 cu\u00e1l es el estado actual de la investigaci\u00f3n en enfermedades raras en Espa\u00f1a que ofrece el Mapa de Recursos de Investigaci\u00f3n en Enfermedades Raras (MAPER).<\/p>\n
En la segunda parte del acto, moderada por Llu\u00eds Montoliu (U756 CIBERER), se expondr\u00e1 c\u00f3mo los investigadores y los afectados trabajan juntos en busca de soluciones. M\u00f3nica Puerto, presidenta de la Asociaci\u00f3n de Ayuda a Personas con Albinismo (ALBA) y del Consejo Asesor de Pacientes (CAP), presentar\u00e1 este \u00faltimo \u00f3rgano asesor del CIBERER.<\/p>\n
Tambi\u00e9n se estrenar\u00e1n los dos v\u00eddeos cortos producidos por el CIBERER sobre casos concretos de colaboraci\u00f3n de \u00e9xito de los investigadores y los afectados: el primero de ellos narra la colaboraci\u00f3n en materia de diagn\u00f3stico de investigadores del centro con la Asociaci\u00f3n de Enfermos de Patolog\u00edas Mitocondriales (AEPMI) y la Fundaci\u00f3n Ana Carolina D\u00edez Mahou (FACDM). En el segundo, se relata el proyecto conjunto de b\u00fasqueda de terapia de los investigadores y la Asociaci\u00f3n DEBRA-Piel de Mariposa (DEBRA).<\/p>\n
Alba Ancochea, Directora de FEDER, intervendr\u00e1 para explicar la participaci\u00f3n activa de los pacientes en los \u00f3rganos de gobierno del CIBERER, desde su experiencia como miembro del CAP y del Comit\u00e9 Cient\u00edfico Asesor Externo (SAB).<\/p>\n
La jornada se cerrar\u00e1 con una mesa redonda sobre las relaciones entre las asociaciones de pacientes y los investigadores.<\/p>\n
Los asistentes a este encuentro podr\u00e1n tambi\u00e9n visitar la Exposici\u00f3n Menos Raras, que explica 20 enfermedades raras y la investigaci\u00f3n que se realiza sobre ellas en Espa\u00f1a.<\/p>\n
\u00daltima actualizaci\u00f3n: 15\/01\/2019.<\/p>\n<\/p>\n
Fuente: FEDER El CIBERER celebra la jornada 'Investigar es avanzar' por el D\u00eda Mundial de las Enfermedades Raras<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Fuente: CIBERER | El Sal\u00f3n de actos del CaixaForum Madrid acoger\u00e1 la octava edici\u00f3n de la Jornada \u00abInvestigar es avanzar\u00bb del CIBERER el pr\u00f3ximo 28 de febrero, D\u00eda Mundial de las Enfermedades Raras. Investigadores del centro y representantes de las personas afectadas expondr\u00e1n […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-4170","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\n
El CIBERER celebra la jornada 'Investigar es avanzar' por el D\u00eda Mundial de las Enfermedades Raras - 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\/2019\/01\/15\/el-ciberer-celebra-la-jornada-investigar-es-avanzar-por-el-dia-mundial-de-las-enfermedades-raras\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"El CIBERER celebra la jornada 'Investigar es avanzar' por el D\u00eda Mundial de las Enfermedades Raras - 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: Fuente: CIBERER | El Sal\u00f3n de actos del CaixaForum Madrid acoger\u00e1 la octava edici\u00f3n de la Jornada \u00abInvestigar es avanzar\u00bb del CIBERER el pr\u00f3ximo 28 de febrero, D\u00eda Mundial de las Enfermedades Raras. 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