Author Archives: Aniridia Network

About Aniridia Network

A charity support group for people with the genetic visual impairment aniridia and their families in the UK and Ireland. Our vision is that people with/associated with aniridia are hopeful, confident, supported and well informed regarding aniridia. Founded in 2000. First registered as a charity in 2011 and fully in 2018.

Goggles and aniridia

Swimming is a very healthy and enjoyable activity, but with reduced vision and highly sensitive eyes due to aniridia, regular goggles may be of limited use. Children, for example, may find it difficult to see their instructors in swimming lessons. … Continue reading

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Five go to Paris for European Conference on Aniridia 2018

Five members of Aniridia Network travelled to Paris for a conference about the science and treatment of aniridia. They met the world’s top experts on aniridia and learned about their latest research and techniques. They also took part in a … Continue reading

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Al’s sight loss and depression journey

  Hi, I’m Al, I’m 28 and I’m from South Wales. I have been registered as severely sight impaired (blind) since birth due to aniridia and nystagmus, caused by a rare missing gene that resulted in a condition called WAGR … Continue reading

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Reviews of Conference 2018

People at the Aniridia Network Conference 2018 said: “It gave an opportunity to learn about different aspects of aniridia. It made me feel like I really belonged there.” Meeting lots of people and having a good variety of speakers made it … Continue reading

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Aniridia Map

People with aniridia are spread all over the world. But where is everybody based? How many people are there with aniridia in each country? It’s impossible to have exact figures, but the Disease Maps website is a useful way to … Continue reading

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Responses to feedback about Conference 2018

Thank you for all the excellent feedback about this years conference. We will certainly try to put in place many of the suggestions that were made. We will publish the survey results shortly. There were some points made, that we … Continue reading

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Liz’s Aniridia Network Conference 2018

Intense but recommended: Liz’s account of Aniridia Network Conference 2018, the first time she come to such an event. Continue reading

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500km Bike Ride Fundraiser

Cyclist Matt Hill took on his biggest challenge yet in aid of the Aniridia Network – riding 500km in a single day! That’s 100km further than the ride he completed for us last year. On Saturday 16th June, Matt cycled across … Continue reading

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Fern Lulham – Living with Aniridia

We were delighted to welcome motivational speaker Fern Lulham to the Aniridia Network Conference 2018 in April. She gave a very uplifting presentation about her life with aniridia, which got a very positive reaction from the audience. She also took … Continue reading

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Half Marathon Fundraiser

Katja Lumezi’s daughter Tina was born with aniridia, and from the moment she was diagnosed they have received “immensely valuable” support from the Aniridia Network and Moorfields Eye Hospital. To show their gratitude, Katja ran the Hackney Half Marathon on … Continue reading

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