El diputado de Empresas Públicas, Rafael Pérez, anunció la continuidad de la colaboración entre la empresa de la Diputación Imelsa y la Federación Española de Enfermedades Raras (FEDER)
Almudena Amaya, Delegada de FEDER en la Comunidad Valenciana, afirmó «El apoyo social que ha tenido el Camino Solidario, ha logrado que el colectivo de afectados se sienta más respaldado por los valencianos y valencianas»
El diputado provincial de Empresas Públicas, Rafael Pérez, recibió ayer a una delegación de la Federación Española de Enfermedades Raras (FEDER) para hacerle entrega de los 25.650 euros recaudados durante el Camino Solidario por las Enfermedades Raras que recorrió toda la provincia de Valencia.
Esta donación irá destinada a un biobanco público para la investigación de las dolencias poco frecuentes, dependiente del CIBERER (Centro de Investigación Biomédica en Red de Enfermedades Raras).
En el acto de entrega estuvieron presentes el subdirector de CIBERER, José María Millán, la responsable técnico de CIBERER BIOBANK, Virginia Corrochano, la presidenta de la delegación valenciana de FEDER, Almudena Amaya y Víctor Cerdá, brigadista forestal de Imelsa que protagonizó el Camino Solidario.
Rafael Pérez expresó su confianza en que “iniciativas como el Camino Solidario puedan servir de revulsivo, no sólo para la concienciación de la sociedad, sino para que se apueste por líneas de investigación concretas como la que se realiza desde el CIBERER, uno de los organismos más prestigiosos en esta materia”.
Asimismo, el diputado de Empresas Públicas anunció que “la colaboración entre Imelsa y FEDER se potenciará durante el próximo año, porque la clave para que estos proyectos lleguen a buen término es que exista una continuidad”.
La presidenta de la delegación valenciana de FEDER, Almudena Amaya destacó “el apoyo social que ha tenido el Camino Solidario, que ha logrado que el colectivo de afectados se sienta más respaldado por los valencianos y valencianas”. Amaya valoró como “una excelente noticia” el anuncio de nuevas acciones solidarias promovidas por Imelsa para el año 2014.
El subdirector de Ciberer, José María Millán, ha explicado que la cantidad recaudada durante el Camino Solidario se va a invertir en un biobanco público “que tiene como objetivo producir células pluripotentes inducidas a partir de las propias células de los enfermos, algo que permitirá avanzar en la investigación de las enfermedades raras”.
Por su parte, el brigadista forestal de Imelsa, que llevó a cabo el Camino Solidario por las Enfermedades Raras, Víctor Cerdá, mostró su satisfacción “porque todo el esfuerzo que realizamos durante las 30 etapas del Camino se va a ver plasmado en un proyecto real de investigación que beneficiará a multitud de afectados por alguna dolencia poco común”.
Además, Víctor destacó el hecho de que “un altísimo porcentaje de la recaudación final se ha logrado a través de pequeñas donaciones de 2 y 5 euros por la compra de pulseras y camisetas solidarias, lo que da una idea de la cantidad de gente que se ha implicado en este proyecto”.
Un centro de investigación de referencia
El Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER) es uno de los nueve consorcios públicos establecidos por iniciativa del Instituto de Salud Carlos III, creado para servir de referencia, coordinar y potenciar la investigación sobre las enfermedades raras en España.
CIBERER está formado por 60 grupos de investigación, ligados a 29 instituciones consorciadas de primer orden y agrupa a 700 investigadores.
Con esta estructura en red, se constituye como iniciativa pionera para facilitar sinergias entre grupos e instituciones punteras en diferentes áreas y disciplinas dentro del campo de las enfermedades raras.
Camino Solidario
El Camino Solidario por las Enfermedades Raras, protagonizado por Víctor Cerdá, fue una iniciativa de Imelsa que se desarrolló entre el 17 de septiembre y el 19 de octubre con el objetivo de ayudar al colectivo de afectados por alguna enfermedad rara.
El reto deportivo consistió en pasar por todos y cada uno de los 266 municipios de la provincia de Valencia, durante un recorrido a pie que superó los 1.800 kilómetros, y que completó a lo largo de 30 etapas. Más de 13.000 personas se unieron a Víctor Cerdá en alguno de los tramos del Camino para solidarizarse con el colectivo de afectados.
Fuente: María Tome; Rebeca Simón ( Dpto. Comunciación – FEDER )
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