un \u00f3rgano m\u00e1s dentro de la estructura<\/a> del mismo, junto al Comit\u00e9 de Direcci\u00f3n o el Comit\u00e9 Cient\u00edfico Asesor Externo del que tambi\u00e9n formamos parte a trav\u00e9s de Alba Ancochea, Directora de nuestra Federaci\u00f3n y Fundaci\u00f3n. En esta estructura tambi\u00e9n se incluyen el Consejo Rector, la Comisi\u00f3n Permanente, Instituciones Consorciadas, Unidad T\u00e9cnica y Gesti\u00f3n Cient\u00edfica.<\/p>\nEl Consejo Asesor de Pacientes es un foro formado por entidades y asociaciones de pacientes que tiene como objetivo contribuir a la mejora de la calidad de la investigaci\u00f3n en enfermedades raras, se puso en marcha el pasado viernes 7 de julio con su primera reuni\u00f3n en el Hospital Universitario La Paz de Madrid.<\/p>\n
Desde FEDER participamos en este nuevo \u00f3rgano, creado a principios del mes de julio, que busca promover la participaci\u00f3n de los pacientes en la actividad del CIBERER como una forma de entender sus necesidades y lograr su implicaci\u00f3n en las pol\u00edticas de investigaci\u00f3n del centro. Adem\u00e1s, recoger\u00e1 sus prioridades en materia de investigaci\u00f3n.<\/p>\n
El Consejo Asesor de Pacientes tambi\u00e9n asesorar\u00e1 sobre las necesidades de formaci\u00f3n de las asociaciones de afectados, revisar\u00e1 los materiales divulgativos orientados a los pacientes realizados por el CIBERER e informar\u00e1 acerca de los distintos recursos de investigaci\u00f3n de los que sus miembros tengan conocimiento.<\/p>\n
Los 10 miembros del Consejo Asesor de Pacientes del CIBERER son:<\/p>\n
– Juan Carri\u00f3n, presidente de FEDER.<\/p>\n
– Francisco Monfort, presidente de la Asociaci\u00f3n S\u00edndrome Hemol\u00edtico Ur\u00e9mico At\u00edpico.<\/p>\n
– Mei Garc\u00eda, vicepresidenta de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Metab\u00f3licas Hereditarias.<\/p>\n
– Javier P\u00e9rez-M\u00ednguez, miembro de la Asociaci\u00f3n de Enfermos de Patolog\u00edas Mitocondriales, director de la Fundaci\u00f3n Ana Carolina D\u00edez Mahou y representante de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Neuromusculares (ASEM).<\/p>\n
– Merc\u00e8 Bellavista, presidenta de la Asociaci\u00f3n Catalana S\u00edndrome X Fr\u00e1gil.<\/p>\n
– M\u00f3nica Puerto, presidenta de la Asociaci\u00f3n de Ayuda a Personas con Albinismo (ALBA).<\/p>\n
– Raquel Ciriza, presidenta de la Asociaci\u00f3n Espa\u00f1ola de Afectados por Acromegalia.<\/p>\n
– Evanina Morcillo, directora de la Asociaci\u00f3n de Epidermolisis Bullosa de Espa\u00f1a (DEBRA).<\/p>\n
– Pablo Lapunzina, director cient\u00edfico del CIBERER.<\/p>\n
– Beatriz G\u00f3mez, gestora de la actividad cient\u00edfica del CIBERER.<\/p>\n
A esta primera reuni\u00f3n, asisti\u00f3 Fide Mir\u00f3n, vicepresidenta de FEDER, en representaci\u00f3n de Juan Carri\u00f3n.<\/p>\n
\u00daltima actualizaci\u00f3n: 31\/07\/2017.<\/p>\n
<\/p>\n
Fuente: FEDER El Consejo Asesor de Pacientes se integra dentro del CIBERER<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El Consejo Asesor de Pacientes del CIBERER ha sido integrado como un \u00f3rgano m\u00e1s dentro de la estructura del mismo, junto al Comit\u00e9 de Direcci\u00f3n o el Comit\u00e9 Cient\u00edfico Asesor Externo del que tambi\u00e9n formamos parte a trav\u00e9s de Alba Ancochea, Directora […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-3068","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\n
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