FEDER y CIBERER se unen por la investigación en ER

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La Federación Española de Enfermedades Raras (FEDER) se ha reunido el pasado 30 de julio con el Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER) con el objetivo de continuar avanzando y trabajando de manera conjunta y coordinada en la investigación de las enfermedades poco frecuentes.

Durante la reunión -que tuvo lugar con Francesc Palau, director del Centro y con José María Millán, subdirector- representantes de FEDER mostraron interés por los últimos proyectos del CIBERER. Jordi Cruz, miembro de la Junta Directiva de FEDER y uno de los asistentes a la reunión explica que “nuestro interés es conocer a través de un mapa de investigación en enfermedades raras qué enfermedades se están investigando en España.

No sólo desde el CIBERER, sino también a través de Orphanet y otras estructuras. Además, también es preciso conocer qué investigadores están trabajando actualmente en el área de las enfermedades poco frecuentes y dónde están localizados”. La finalidad es poder llegar a un acuerdo de colaboración conjunto para dar difusión a estos recursos a través de los medios corporativos de FEDER y lograr así que cada vez más personas puedan tener acceso a la información.

Formación en enfermedades poco frecuentes

Durante la visita, la Federación mostró su interés por continuar mejorando la formación en el área de enfermedades poco frecuentes. Concretamente, se habló de la necesidad de impulsar un Máster en Enfermedades Raras. “Nuestro objetivo es trabajar en esta línea para intentar crear una formación más específica en enfermedades poco frecuentes, para que los profesionales tanto de la medicina, como psicología, logopedia, fisioterapia o incluso representantes de asociaciones de pacientes puedan hacer esta especialización dentro de un postgrado o master”.

Además, también se valoró la posibilidad de realizar la I Conferencia Científica sobre Enfermedades Raras en España, dado que existe un interés creciente entre el sector de conocer más sobre los aspectos científicos de estas patologías. Desde FEDER alaban la gran labor de los responsables del CIBERER.

“Tanto Palau como Millán son personas muy comprometidas con las familias con enfermedades poco frecuentes. Desde el primer momento se han puesto a disposición de las asociaciones de pacientes para trabajar y cooperar, algo fundamental en el campo de las enfermedades raras”, asegura Cruz.

La reunión, a la que también asistieron Juan Carrión, presidente de FEDER y Almudena Amaya, delegada de FEDER Comunidad Valenciana, es un punto de inicio “de un largo y productivo camino”, aseguran desde FEDER. El siguiente paso será la firma de un convenio marco de colaboración en donde se establezcan las líneas de trabajo conjuntas para el próximo año.

Fuente: enfermedades-raras.org

540 comentarios en “FEDER y CIBERER se unen por la investigación en ER”

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