CARTA DE SERVICIOS
Desde la Asociación estamos trabajando, gracias a vuestra colaboración con la cuota semestral, con la lotería, etc., nuestra intención es resolver los problemas que ocasiona padecer una Enfermedad Degenerativa de la Retina (E.D.R).
Es por ello, por lo que os hacemos llegar un pequeño resumen de los Servicios que se ofrecen desde la Asociación, explicando en qué consiste cada uno y los pasos que hay que seguir para solicitarlo. RECORDAD QUE LA ATENCIÓN PRESTADA, ES SIEMPRE PERSONALIZADA E INDIVIDUAL Y QUE EN CUALQUIER MOMENTO ESTAMOS A VUESTRA DISPOSICIÓN PARA HACERNOS ECO DE TODAS VUESTRAS SUGERENCIAS, QUEJAS, APORTACIONES, DUDAS Y QUE SOLCITAMOS NOS TRANSMITÁIS, UNICAMENTE CON EL AFÁN DE MEJORAR.
UNIDAD DE REFERENCIA: Existe un Centro de Referencia que se encarga delCONTROL, DIAGNÓSTICO Y SEGUIMIENTO de los afectados. Está ubicado en el Hospital General de Valencia. Cualquier afectado de la Comunidad Valenciana y que pertenezca a la Asociación lo puede solicitar.
Documentación a aportar:
Se entrega esta documentación en la Asociación y desde aquí se solicita la asistencia en esta Unidad. Las consultas para Retinosis se realizan todos los viernes y la Doctora Ana Cabrera esta al cargo de realizar las pruebas.
Cada paciente puede solicitar que se les entreguen los resultados de las pruebas y un informe de la situación del paciente.
CONSEJO GENÉTICO: Dado que nuestra patología es de origen genético se hace necesario el asesoramiento genético, el cual consiste en ofrecer la información médica y científica a las personas afectadas por una enfermedad o con riesgo de padecer o transmitir esta determinada enfermedad a su descendencia.
Para poder realizar el estudio es necesario rellenar una encuesta proporcionada por la Asociación, que se entregará cuando acudan a la entrevista con las genetistas.
Los genetistas visitan en la Asociación una vez al mes .Previamente comunican el día y la hora y a los afectados que lo han solicitado se les avisa para que acudan a la cita.
TRÁMITE DE MINUSVALÍA: Preparación de informes médicos y sociales.
Se puede revisar las minusvalías que se resolvieron hace tiempo.
Como cada caso es distinto es preferible ponerse en contacto con la Trabajadora Social para iniciar el trámite.
GESTION DE INVALIDEZ: Preparación de los informes médicos y sociales. Es necesario:
Se están revisando las pensiones de Invalidez absoluta a Gran Invalidez en los casos que se haya producido un agravamiento de la enfermedad y que el afectado no haya cumplido todavía los 65 años.
Como todos los casos son particulares hay que llamar a la Trabajadora Social para que se les informe personalmente de los pasos a seguir y la documentación a presentar.
LENGUAJE DE SIGNOS: Se imparte Curso de Lenguaje de Signos por una profesora titulada.
Estos cursos se imparten en la Asociación, una vez por semana. Empiezan en octubre y terminan en mayo. Se entrega un Certificado de asistencia al curso. Cualquier persona puede participar en ellos, tanto socios como familiares o amigos, estudiantes o personas que trabajen y estén interesadas en aprender el lenguaje de signos.
Para Cualquier información hay que dirigirse a la Asociación.
GRUPOS DE AYUDA MUTUA (GAM): Son grupos terapéuticos que se llevan a cabo dos veces al mes, para que las personas afectadas compartan sus propias experiencias a la hora de afrontar la enfermedad.
Alicante: el grupo está dirigido por una Psicóloga (Esther López) y se reúne el primer Martes de mes en Horario de 18 h30 a 20h30.
La Trabajadora Social que se encarga de la Delegación de Alicante es GEMA ORTIZ .Su horario de atención es los Miércoles de 16h a 20h en la Delegación de la Once, Avda Aguilera nº 43.
Podéis poneros en contacto con ella para participar en los grupos y para aclarar cualquier duda que tengáis.
Valencia El grupo de Ayuda se reúne los miércoles, cada 15 días en el local de la Asociación y la dirige Cynthia Pascual en horario de 16 h 30 a 18h 30.Puede participar cualquier afectado que lo solicite llamando a la Asociación.
HORARIO DE ATENCIÓN:
Valencia: Todas las mañanas de 9:00 a 13:00 horas, y martes y jueves por la tarde de 15:00 a 18:00 horas.
Alicante: Miércoles de 16:00 a 20:00 horas.
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