This website, including the government funded handbook «Living with aniridia», is unfortunately only in Norwegian. You may try to Google Translate this site.
The Norwegian Association of Aniridia – Aniridi Norge – is a non-profit (NPO), non-religous, volunteer organization for and by people with aniridia, and their families and friends. The organization was founded in 2003 and have since then established a strong network in Norway with 165 members by the end of 2014. We are for the most part government-funded.
Our mission statement is to:
- contribute to increased expertise and knowledge about the diagnosis in Norway
- provide help and guidance to individuals who need information and referral assistance to improve their quality of life.
- influence decision makers, organizations and professionals
- establish and maintain cooperation with foreign and international aniridia organizations.
- establish a good contact with relevant academic and research communities, and stimulate more research and professional focus on the diagnosis aniridia.
- conducting peer work and organize joint meetings for people with aniridia and their families so that they can exchange experiences and knowledge.
Aniridia, meaning “without iris”, is a rare genetic disorder affecting vision, characterised by incomplete formation of the eye iris (the coloured part of the eye that surrounds the black pupil). It may also cause other parts of the eye to be under-developed such as the optic nerve and the macula (the central part of the retina). People with aniridia may also develop other eye conditions. Aniridia and these associated conditions affect everyone differently. So while some people with aniridia are partially sighted or blind, others may have near normal sight.
There are 67 (2014) known (to us) persons living in Norway with aniridia, and the prevalence in the country is 1:76.000 (Dr. Edén, 2008). Most newborns with aniridia are diagnosed within the first half year after the birth. All diagnosed patients are offered monitoring and necessary treatments, as well as low vision aids, by the free healthcare system throughout their life.
You may email us at the address firstname.lastname@example.org. If you write us in english, we will respond in english.
Aniridi Norge is a member association of the European federation of Aniridia organizations – Aniridia Europe.