Nombre:
ASOCIACIÓN ARAGONESA DE RETINOSIS PIGMENTARIA
Página web:
Teléfono: 976 282 477
Correo electrónico: mtmelero@able.es
Dirección postal:
Pº Echegaray y Caballero, 76 Edificio ONCE
50003 Zaragoza
Ámbito / Especialidad:
Aragón
Breve descripción:
Objectives:
- To know the real impact of this disease in Aragon; retihinosos pigmentosa is a group of genetic diseases, of congenital-inherited origin which damage the retina and are characterized by causing a gradual loss of vision.
- To promote research, raising awareness among both public and private organizations to support our Research Fund.
- To collaborate with IRPA (International Association of Retihinosis Pigmentosa), to which we belong as full members, by attending international congresses and meetings.
Services and Activities:
- Advice and guidance on Retihinosis Pigmentosa.
- Accompanying in negotiations, mainly sanitary.
- Helping the patient to incorporate to ONCE (National Organization of Spanish Bñlind People)
Our Volunteers:
- Our volunteers are mainly relatives of people suffering from retihinosis pigmentosa.
- They work together in the activities that we carry out in our association.
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