ASOCIACIÓN DE AFECTADOS POR LA RETINOSIS PIGMENTARIA DE LA COMUNIDAD VALENCIANA

Nombre:
ASOCIACIÓN DE AFECTADOS POR LA RETINOSIS PIGMENTARIA DE LA COMUNIDAD VALENCIANA

Página web:http://www.retinacv.es/

Teléfono: 963 511 735 / 608 723 624

Correo electrónico: info@retinacv.es

Dirección postal:
Avda. del Oeste 48 – 7º – J 46001 Valencia

Ámbito / Especialidad:

Breve descripción:
The association of People Affected by Retinitis Pigmentosa of the Region of Valencia, was registered as an organization of public utility by the council of ministers on January 27, 1995. This proclamation grants the association a certain number of tax advantages comparable to foundations. It was in 2003 when the Association of People Affected by Retinitis Pigmentosa of the Region of Valencia, changed its name to Retina Comunidad Valenciana, thereby agreeing that retinitis pigmentosa is a combination of hereditary and degenerative retinal diseases. In 2006, believing that joining forces can only be positive, the resolution to become part of FEDER (Spanish Federation of Rare Diseases). As a part of an uncountable number of activities carried out throughout this time, it is worth highlighting the First Usher International Congress, held in 2000, and the Charity Concert held at Palau de la Musica in Valencia by “Los Panchos” in 2007. The first one was a good example of the efforts in favour of the diffusion of our disease, and the second one in defense of the acquisition of economic resources to support research. The association Retina Comunidad Valenciana brings together more than 500 families suffering from this disease. OBJECTIVES

  • To know the real prevalence of the disease in Spain, carrying out at the same time a social awareness campaign
  • Report scientific developments to the rest of partners
  • First contact and welcoming of the patient and his family.
  • Psychological and social support
  • Legal advice channelled to the processing of disabilities and invalidities.
  • Support for research and researchers (grants, research funds,...)
  • Collaboration with scientific interdisciplinary teams.
  • Coordination of doctors` appointments in the units of Diagnosis, Control and Monitoring of patients.
  • Search for an improved quality of living for the patients and their families.
  • Get-togethers and camp with those affected , their friends and families.

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