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Category Archives: Patients’ tales
Conference 2023 review
We held our first in-person conference for 4 years on 2 September 2023 at the Library of Birmingham. It was good to be back together after the pandemic – well, if you were able to get there! Many were: despite … Continue reading
A car centric world is inaccessible for visually impaired people (World Car Free Day)
By Mike Today is World Car Free Day, when all around the world towns and cities allow people to experience streets free of motor traffic. It’s a great chance to re-imagine our streets around people. While not expressly an environmental … Continue reading
Conference 2023: Amy’s experience as a first-time attendee
I have lived with aniridia since birth; and no matter how many ‘specialised’ doctors you see or how many other people with visual impairments you meet, you still feel isolated, different, and misunderstood. Now I don’t speak for everyone when … Continue reading
My first aniridia meet up
After moving to London, I stumbled across Aniridia Network (AN) and decided to sign up. All my well laid plans to get involved, however, fell to the wayside as I got distracted by PhD study, making new friends, and getting … Continue reading
Finlay is England Rugby Union mascot
A boy with aniridia served as the mascot of the England rugby team at their game with South Africa. He proudly led the team out on to the pitch at Twickenham today. Finlay’s godparent moninated him following a call by … Continue reading
Posted in Parents' accounts, Patients' tales
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Conference 2022
Our main event of the year took place online today. People from all arond the UK, Ireland and beyond joined via Zoom to hear and talk about various aspects of aniridia. There reactions were heartening: I’m very grateful for all … Continue reading
Katie: Judo Paralympian with aniridia
To show what’s possible for a person with aniridia, we checked in with one competing in judo at the Tokyo Paralympics. Meet Katie, part of Team USA. I’m Katie Davis from Sacramento California. I was born with aniridia and nystagmus, … Continue reading
Amanda: Goalball Paralympian with aniridia
To demonstrate the amazing things a person with aniridia can achieve, we interviewed one competing at their 3rd Paralympics in Tokyo. Amanda is part of Team USA, hoping to better her USA Women’s Goalball team’s bronze medal won in 2016. … Continue reading
Bernie and Abbie interview each other
Mother and daughter with aniridia decided to ask each other questions on camera about their lives to celebreate Aniridia Day 2021 Abbie has made other videos about aniridia and other aspects of her life, check them out. To take part … Continue reading
Faith’s story
“Aniridia affects all aspects of my life but I don’t doubt my abilities and continue pushing my boundaries” Continue reading
