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Category Archives: Parents’ accounts
Empathising with my son – Raising a child with anirida when you have it too
At our recent online meetup to mark Aniridia Day and Father’s Day, we heard from Simon, 43, who has aniridia and is bringing up a child with the same condition. In his talk he shared what it’s like to navigate … Continue reading
Looking Back on Aniridia – 30 Years of Learning
This year’s Aniridia Day on 21 June coincided with Father’s Day. So we held a special online meet up to explore parenting topics, with 3 short talks and an open discussion. One of the talks was by Mark, 62, who … Continue reading
Parenting and aniridia: Online meet up
Join us for an evening to mark Aniridia Day and explore parenting topics with 3 short talks and an open discussion for everyone.
Learning your child has aniridia brings a range of thoughts and emotions. The effects on parents are not talked about enough, especially regarding men. We’ll explore these topics. 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
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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6th European Aniridia Conference
By Claire My daughter Laura, who has aniridia, and I set off for the conference early on Friday 3rd June to join other families seeking more information about this rare condition that many health professionals are unaware of. How heartening to … Continue reading
Posted in International, Parents' accounts
Tagged Aniridia Europe, European Aniridia Conference
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Book review: ‘Auditory Processing Disorder’ by Alyson Mountjoy
This book is written for parents and adults with APD, plus educational and medical professionals. Auditory Processing Disorder (APD) affects many people with aniridia. This book provides a lot of insight into the condition. It was published in March 2021 … 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
Rhiannon’s Story
“I’m immensely proud of my loving little girl in every possible way, Probably her toughest personal challenge this year was learning to jump, due to her poor vision, but her persistence paid off.” For Rare Diseases Day 2021, the key … 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
Aniridia Network 