FEDERACIÓN DE ASOCIACIONES DE DISTROFIAS HEREDITARIAS DE RETINA DE ESPAÑA

Nombre:
FEDERACIÓN DE ASOCIACIONES DE DISTROFIAS HEREDITARIAS DE RETINA DE ESPAÑA

Página web:http://www.retinosisfarpe.org/

Teléfono: 915320707

Correo electrónico: farpe@retinosisfarpe.org

Dirección postal:
C/ de la Montera 24, 4º J 28013, Madrid

Ámbito / Especialidad:
Nacional

Breve descripción:
The Federation of Spanish Hereditary Retinal Dystrophies Associations, is made up by 11 national associations that work to improve the living conditions of people suffering from retinitis pigmentosa and other retinal dystrophies The aim of the Federation and its member Associations, is to progress in the knowledge of the causes and consequences of hereditary retinal dystrophies, with the intention of enabling treatments to lessen their effects and, eventually, to cure them and eliminate them. Objectives:

  • to support medical-scientific research on hereditary retinal dystrophies and other sight disorders
  • to disseminate updated information about inherited retinal dystrophies.
  • to promote personal and collective awareness of visual impairments.
  • to encourage the safety of people affected by hereditary retinal dystrophies.
  • to encourage the implementation of future treatments in public medicine to fight .hereditary retinal dystrophies.
  • To make public administrations aware of the need to promote research on hereditary retinal dystrophies.
  • to activate a Hereditary Retinal Dystrophies Protocol, in order to achieve . treatment, control and follow-up of patients, as well as improve the search of solutions for visual disorders.

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