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Author Archives: Aniridia Network
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
Posted in Aniridia Network news, Research
Tagged Aniridia Europe, Conference, European Aniridia Conference, event
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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
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
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
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
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
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
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
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
Nystagmus Network & Awareness Day
Many people with aniridia also have nystagmus, and this year’s Nystagmus Awareness Day will take place on 20th June – the day before Aniridia Day! The Nystagmus Network have celebrated Wobbly Wednesday in November since 2013, but this year they have permanently … Continue reading
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