Actividades

Se vienen desarrollando múltiples actividades.

Desde la sede en Valencia:

C/Garrigues N.º 3, segundo piso, A-B    CP 46001 
Teléfonos de contacto: 96 351 17 35 / 608 723 624
E-mail: info@retinacv.es 

Nuestro horario en Valencia

Oficina: de lunes a viernes, de 9:00 a 14:00 horas
Atención al público: martes y jueves: 15:30 a 18:00 horas.

 

También tenemos delegación en Alicante, ubicada en: 

C/Tucumán N.º 20, Entresuelo   CP 03003

Teléfonos de contacto: 961 059 811 / 605 311 221

E-mail: alicante@retinacv.es

Nuestro horario en Alicante:

Lunes: 18 a 20 horas.
Martes, miércoles y jueves: 9:30 a 13:30 horas.

 

Entre los fines de la Asociación se encuentran:

-Conocimiento, estudio, Asistencia, Promoción y Apoyo a la investigación científica de las D.H.R.

-Atención, acogida, orientación, intervención e información de las personas afectadas y familiares. 

-Promoción de los servicios médicos, asistenciales, educativos, laborales, residenciales y sociales necesarios y adecuados a los pacientes de enfermedades degenerativas de retina, en especial, de la denominada RETINOSIS PIGMENTARIA.

-Dar a conocer a la comunidad los problemas humanos, psicológicos y sociales de las personas con enfermedades degenerativas de retina.

-La reivindicación en nombre de las personas afectadas de los derechos de éstos ante todas las instancias públicas y privadas.

-Cualquier otra acción legal que de modo directo o indirecto ayude o redunde en beneficio de las enfermedades degenerativas de retina. 

 

En el aspecto de acogimiento de la persona afectada, en primera visita se procura un grado de sensibilidad máximo. En la mayoría de los casos la persona y sus familiares llegan en situaciones muy deprimidas con pocas esperanzas para poder enfrentarse a las consecuencias de esta patología. En este sentido se realizan entrevistas personalizadas por parte de las trabajadoras sociales, y si se considera necesario también por una psicóloga con el fin de enfocar una intervención adecuada y personalizada. Hay que reflexionar un momento, lo duro y desagradable que va a suponer para la persona la noticia de que su enfermedad le puede suponer la pérdida de la vista y de que no hay nada para retrasar esta pérdida de visión.

La labor de difusión se realiza mediante la realización de charlas médico-científicas: En estas charlas se tiene oportunidad de poder contactar directamente con los especialistas y consultarles todas las cuestiones sobre las que se tengan dudas tanto afectados como familiares; también participando en campañas de difusión junto con otras entidades, o en días señalados, como el Día Mundial de la Retinosis Pigmentaria.

En el campo más concreto de la ayuda emocional, se producen diversos encuentros liderados por una psicopedagoga y una psicóloga, bajo la denominación de Grupos de Ayuda Mutua (GAM). En dichas reuniones la persona afectada se enfrenta colectivamente a los diferentes resortes para poder convivir con su enfermedad. Estos encuentros suelen ser semanales.

En el ámbito de defensa jurídico-social de la persona afectada, la asociación dispone de un acuerdo con dos Licenciados en derecho, especialistas en la defensa jurídica laboral para la obtención de pensiones por invalidez, etc. También en la asociación se viene facilitando los trámites para la obtención de discapacidad y su revisión.

El seguimiento y el control médico de la persona afectada es una parte primordial, se realiza coordinando las citas médicas del afectado con los diferentes centros sanitarios, para su posterior evaluación y seguimiento, facilitando así tanto la labor clínica como la de investigación. Se contempla una estrecha colaboración con el equipo científico apoyando en la medida de nuestras posibilidades, mediante becas, la participación en congresos, etc.

Al mismo tiempo se realizan diversos encuentros lúdicos por medio de excursiones a diversas partes de la Comunidad Valenciana, comidas o cenas de Navidad, etc. A través de estas convivencias se permite un acercamiento entre familiares-afectados, fomentando la participación social y evitando el aislamiento social. 

 

El equipo humano con el que actualmente cuenta la asociación de Retina es: dos trabajadoras sociales, una en Valencia y otra en Alicante, una auxiliar administrativa en Valencia, dos psicólogas y una psicopedagoga y un Técnico en comunicación, además de la valiosa colaboración de un equipo voluntario de profesionales (Guías-intérpretes, abogados) y todas aquellas personas que siendo socios o no, contribuyen a la realización de los diversos programas que esta asociación pretende llevar a cabo.

 

En definitiva, la Asociación de Retina de la Comunidad Valenciana intenta mejorar la calidad de vida de la persona que vive con una discapacidad visual grave.

Cabe destacar también la importancia de las Asociaciones por muchísimas razones, pero una es, que desde ellas, los médicos pueden acercarse a los pacientes y participar en proyectos de investigación, siendo también  responsables de la captación de fondos, cruciales para llevar la investigación adelante ya que los investigadores no disponen ni de tiempo suficiente ni de dinero para dedicarse a estos proyectos.

Por último, somos responsables de difundir nuestra problemática, interesando en ellas a las autoridades científicas y políticas del país, para crear un clima favorable a la investigación porque en España, hay buenos investigadores, lo que falta es el apoyo a esa investigación.

 

Nada se consigue desde la soledad, por eso tu Ayuda es muy importante y necesitamos que te embarques en este bonito proyecto que te hemos presentado.

A continuación puedes descargarte la memoria de actividades del año en curso:

Descargar pdf. memoria 

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