ACRÓMATES – ASOCIACIÓN DE AFECTADOS POR ACROMATOPSIA Y MONOCROMATISMO DE CONOS AZULES

Nombre:
ACRÓMATES - Asociación de Afectados por Acromatopsia y Monocromatismo de Conos Azules

Página web:https://acromates.wordpress.com/

Teléfono: (49) 01725665670 / 651632495

Correo electrónico: acromatopsiaes@gmail.com

Dirección postal:
C/ Rosalía de Castro 56 36201 Vigo (Pontevedra)

Ámbito / Especialidad:

Breve descripción:
Acromates (Association of people affected by Achromatopsia and Monochromatism of blue cones) is a non-profit association created in December 2017. The situation that drove its creation was the scarce information in spanish about these two uncommon eye genetic disorders, the lack of data about the number of people affected in our country, and the fact that it is nearly unknown by the ophthalmological community and the society. The main purposes of this association are:

  • Defend the rights and provide advice to people suffering from Achromatopsia  and Monochromatism of blue cones (MCA), and to their families, to achieve their full integration in labour market and in community life.
  • Encourage (in and outside the association) the participation of all those who in different ways are involved in these two disorders, and tend to promote the general interest in them.
  • Promote, through social awareness, the development of different fields: civility education, culture, human rights, social welfare, cooperation for development, fostering research, fighting for equal opportunities,for promotion and caring forpeople at risk of social exclusion because of physical reasons,or any similar causes.
  • Provide partners with all available information about the disease, and spread among them the new scientific, clinical and technical innovations in the treatment of achromatopsia and monochromatism of blue cones
  • Represent partners in all fields and also in public and private organizations, overseeing the defense of the common interests of all partners, as well as their social purposes.
Extra information: What is Achromatopsia?  It is an autosomal recessive , congenital and    non-progressive retinal disorder. Its characteristics are colour blindness, nystagmus photophobia and severely reduced visual acuity due to the lack or poor functioning of cones. It is considered a rare disease and affects one in every thirty thousand people. In Spain, by statistics, there would be 1,300 affected by Achromatopsia.   What is Monochromatism of blue cones (MCA)? MCA is an X-linked recessive disorder. It is characterized by a serious inability to distinguish colours, poor visual  acuity, nystagmus and photophobia due to the malfunction of the red and green photoreceptor cones. It is an incomplete form of Achromatopsia. Approximate prevalence is 1  in every 100,000 people. It concerns almost exclusively men.

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