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Author Archives: Aniridia Network
Graham’s story of life with aniridia and stem cell treatment
Graham has written a blog post about growing up in the UK with aniridia and losing sight due to glaucoma/cataracts. He also writes about the recent initial success at restoring some sight by transplanting stem cells that began in his … Continue reading
Professors’ Bremond Gignac and Rama message for Rare Disease Day 2019
To mark Rare Disease Day on 28 February 2019, two of the top specialists in Europe, made a commitment to keep researching aniridia. Thanks to the French aniridia group Geniris for making this video, that we added subtitles to. Also … Continue reading
1,000 Miles in 200 Days Fundraiser
Laura Cartmill has aniridia and autism, which presents challenges for her everyday life. But she hasn’t let her impairments get in the way of her ambition to achieve and inspire. For example, she plays football at the Torquay United club … Continue reading
Light stimulation centre wows child with aniridia
By Rob and Amelia From about 5 months old our daughter, who has sporadic aniridia, has shown an interest in LED lighting. After speaking with doctors at Moorfields Eye Hospital and more importantly, all the lovely people we met at the Aniridia Network … Continue reading
Scarlett’s sponsored walk
Rachel’s 3-year-old daughter Scarlett has aniridia. Together they are raising money for Aniridia Network by doing a sponsored walk at Tiverton Canal Basins in Devon at 10am on 3 March. Please sponsor them and go along to support them.
Posted in Fundraising
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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
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 ANUK news, Research
Tagged Aniridia Europe, conference, European Conference on Aniridia, 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
