Nombre:
ARPEX -ASOCIACIÓN RETINOSIS PIGMENTARIA EXTREMEÑA
Página web:
Teléfono: 659 879 267
Correo electrónico: retinosis.extremadura@hotmail.com
Dirección postal:
C/ Alhucemas, 44,
06360 Fuente del Maestre – Badajoz
Ámbito / Especialidad:
Breve descripción:
Retinitis pigmentosa is a degenerative disease of the retinal cells, which can lead to blindness. The association of Extremadura ARPEX, was founded on November 25, 1992.
Its scope will be the Autonomous Community of Extremadura, and in order to achieve its goals, remains linked to the rest of spanish associations, forming the Federation of Associations of Retinitis Pigmentosa and other Hereditary Dystrophies (FARPE). It is also a member of FEDER ( Spanish Federation of Rare Diseases).
The aims of this association are:
- to bring together all the people within the Community of Extremadura, who are suffering from retinitis pigmentosa and other hereditary retinal dystrophies, either directly or indirectly.
- to foster individual and group consciousness regarding visual disorders.
- to perform the actions that are deemed convenient for the sake and protection of those affected.
- To promote and encourage medical-scientific research into retinitis pigmentosa and other retinal hereditary dystrophies, by managing with the Administration and Medical Staff, the development and efficient functioning of the Reference Centre ,in order to improve specific research into diagnosis, prevention and treatment of these pathologies in the hospital of Merida.
- to make public powers aware of the importance and relevance that the search of solution has for the affected people.
- to set up cooperation agreements with associations and groups with similar aims to the ones established in our statutes, in order to favour the development of means, ideas and knowledge.
- to train and inform partners and the rest of the community about the problems posed by visual impairments and possible solutions, as well as to make known through regular co communications or regular publications the latest scientific, clinical and technical advances in the treatment of visual impairments.
- to ensure that public medicine, free of charge, implements the specific treatments that may exist to fight retinitis pigmentosa and other degenerative retinal diseases, as well as make those affected by these diseases beneficiaries of future therapeutic breakthroughs.
- to stimulate among the members of the association a spirit of friendliness and mutual help.
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