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Author Archives: Aniridia Network
Insights from UK Genetic Disorders Leadership Symposium 2017
Advice for creating a definitive source of information about a syndrome and the opportunity to be involved in Jeans For Genes Day were just some of the results of the latest event we attended. Aniridia Network (ANUK) Trustee James was among … Continue reading
Milkshakes fund rare disease charities
A business has found an alternative way of raising money for our charity to shaking collection tins – shaking milk! The Pour House in Shrewsbury opened in 2015 as a coffee house by day and cocktail bar by night. … Continue reading
First aniridia meeting in Ireland
Following through on her pledge to start an aniridia group in Ireland, Eleanor has organised its first meeting. She has brilliantly secured the support and a room at the National Council for the Blind Ireland. Saturday 8 April 2017 start 11.15 … Continue reading
London meet-up 2016
We had a lovely informal get together in Caffe Nero, 1 Wrights Lane, Kensington, London, W8 5RY today. Six people with aniridia came along for coffee and chat about their condition. We met right after the excellent Sight Village event over the … Continue reading
What our logo looks like
It occurred to us that some people will never have (clearly) seen the Aniridia Network UK logo designed in 2011. So here’s a description and explanation of the logo: The overall design is a 2 dimensional, stylised, aniridic eye, including … Continue reading
Kids complete Mini Great North Run in aid of aniridia
Four children, one with aniridia took part in this years Mini Great North Run to raise funds for us. Their generous sponsors gave £525 via JustGiving plus a £100 cheque, for them completing the 1.5 kilometre challenge which is open to 3 … Continue reading
2016 Paralympians with aniridia
Athletes with aniridia competed at the Rio 2016 Paralympic Games. Mary Fisher, New Zealand won gold in 100m backstroke S11 with a world record time and 4th or 6th in freestyle swimming at other lengths Amanda Dennis, USA won bronze with her … Continue reading
Travel insurance for people with aniridia
We are often asked: ”Do I need to declare aniridia when applying for travel insurance?” This is often accompanied by outcry at an exorbitant quote when doing so. Regular travel insurance companies often charge a hefty premium to cover medical conditions. … Continue reading
Laura’s story of austism and aniridia
I’m Laura, I’m 26 and was born with aniridia. My eyes get very sore, especially during the summer; I wear dark glasses and these help with the sensitivity. I take two types of eye-drops daily to keep my eye pressures … Continue reading
School girl bakes buns in aid of friend’s aniridia
By Natasha My daughter has aniridia. A girl at her school, not much older than Violet held a bun sale to raise money for a charity of my daughter’s choice. The girl arranged it all by herself, made all the posters to … Continue reading
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