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BOOK: Aniridia and WAGR Syndrome: A Guide for Patients and Their Families
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Category Archives: Patients’ tales
Four steps forward, two steps back …?
Permjit Bhachu is Information, Advice & Guidance Coordinator at the charity Focus Birmingham. At our 2023 conference in Birmingham last September, she gave a talk about one particular person she had been working with, who had endured a great deal of hardship … Continue reading
Living with Auditory Processing Disorder
Alyson Mountjoy is the founder of APD Support UK, which provides information and useful links for people affected by Auditory Processing Disorder, a condition that affects her son. She has also written two books on APD – one of which … Continue reading
Posted in Patients' tales
Tagged auditory processing disorder APD, Conference, Conference 2023
1 Comment
Conference 2024
We held this great event online and it was completely FREE to attend. We had a great line up of speakers, to talk about aniridia related themes. From personal experiences to cutting edge research, education and leadership – something for … Continue reading
Lives with Aniridia & Auditory Processing Disorder
Mother and daughter Bernie and Abbie Reddington both have Aniridia and Auditory Processing Disorder (APD), which have impacted their lives in a variety of ways. They spoke openly at our 2023 Conference in Birmingham last September about the challenges they’ve … Continue reading
Posted in Patients' tales
Tagged auditory processing disorder APD, Conference, Conference 2023
2 Comments
‘Knowing that you’re not on your own’: Research into internet use by people with aniridia
A researcher has found that for people with aniridia, being online, in relation to their condition is: During the past year, a Cardiff University masters student studied the experiences and attitudes of adults with aniridia towards internet and social media … Continue reading
Posted in Patients' tales, Research
Tagged Cardiff University, Conference, Conference 2023, social media
1 Comment
Research into improving transport for visually impaired people & life with aniridia
At our conference in Birmingham in September 2023, Emily Nash gave the following presentation discussing her life with aniridia, and her upcoming research study into how the accessibility of transport can be improved for people with sight loss. The study … Continue reading
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





