Historia

El 6 de mayo de 1.988, un grupo de personas: Antonio Cebollada, Alonso Ruiz, Dolores Sánchez, Alfonso Cobo, Ceferino Campos y Miguel Monfort se decidieron a fundar la Asociación de Retinosis Pigmentaria con el nº 6090 del registro provincial de Valencia. En el acta de fundación hicieron constar como fines principales, la cooperación y ayuda mutua entre los afectados y cómo no, el objetivo principal de buscar soluciones a esta enfermedad.

La primera actividad que se realizó fue organizar y coordinar a los distintos afectados, tanto locales como nacionales. Hasta 1.991 el presidente de la asociación fue Antonio Cebollada contando en la vicepresidencia con Dolores Sánchez. A partir de aquí y hasta 1.997 asumió la presidencia Vicenta Gallart, que más tarde también asumió la presidencia de F.A.R.P.E., organización de la que la Comunidad Valenciana entró a formar parte desde el primer momento. Junto a Vicenta Gallart, continuó Dolores Sánchez en la vicepresidencia, cargo que seguiría ocupando con Joaquín Selva, el cual, tras venir ocupando el puesto de secretario durante años, pasó a ser el presidente desde 1.997 hasta 2004.

Sin embargo, Dolores Sánchez tras muchos años de lucha, decidió tomarse un respiro, aunque en realidad seguirá luchando siempre por los afectados. El relevo lo tomó entonces Almudena Amaya, cuyo ímpetu no es menor, tal y como demuestra desde que en 2004 se hizo cargo de la presidencia.

La Asociación de Afectados por Retinosis Pigmentaría de La Comunidad Valenciana, está declarada de UTILIDAD PÚBLICA por el Consejo de Ministros del día 27 de enero de 1995. Esta declaración confiere a la asociación de una serie de ventajas fiscales equiparándose a las fundaciones.

Fue en 2003 cuando la Asociación de Afectados por Retinosis Pigmentaria de la Comunidad Valenciana pasó a denominarse Retina Comunidad Valenciana, haciendo buena la tesis de que la Retinosis Pigmentaria no es sino un conglomerado de enfermedades heredo-degenerativas de la retina. En 2006, entendiendo que aunar fuerzas no puede sino ser positivo, se adopta la resolución de integrarse en FEDER (Federación Española de Enfermedades Raras)

Dentro de un sin fin de actividades realizadas a lo largo de todo este tiempo, cabría destacar el I Congreso Internacional de Usher, celebrado en el año 2000 y el Concierto Benéfico Celebrado en el Palau de la Música de Valencia por «Los Panchos», celebrado en 2007. Constituyendo el primero de una buena muestra de los esfuerzos en pro de la difusión de nuestra enfermedad y el segundo, en pro de la captación de recursos económicos con los que apoyar la investigación.

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