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Author Archives: Aniridia Network
Meet ups for Aniridia Day 2022
Four gatherings of people affected by aniridia were held around the UK to celebrate this, Aniridia Day. Adults with aniridia hosted the get-togethers. Fellow patients, parents, children, came along to chat about life with our condition. Aniridia Network also bought … Continue reading
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
2021 Volunteer Awards
We would be nothing without the amazing people who give up their time and use their skills to run our charity. We are extremely grateful for all our volunteer’s efforts and what they achieve from them for our beneficiaries. To … Continue reading
Posted in Aniridia Network news
Tagged AGM, Annual General Meeting, awards, volunteering
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2nd hand clothes sold in aid of aniridia
A boutique selling second hand clothes donated £456 of its profits to Aniridia Network. Feel Good Fashion takes in preloved clothes and sells them on, aiming to reduce waste. The proceeds are split: 40% to the previous owner, 40% to … Continue reading
Golf competion raffles raise £1000
The Tidworth Garrison Golf Club runs an annual open competition for seniors, and alongside it a fundraising raffle. For the past 2 years Vice Captain John has arranged for it to be in aid of aniridia. His 4 year granddaughter … 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
Tricia’s fundraising hike up Snowdon
Tricia was motivated to raise mone for Aniridia Network by her 8 year old granddaughter. Olivia is a very bright fun loving child with sporadic aniridia. Her plan was to get sponsored to walk up and down Snowdon; the highest … Continue reading
5th European Aniridia Conference
We at Aniridia Network organised the latest edition of the European Aniridia Conference. It is a biennial event that brings together researchers, practitioners and diagnosis carriers, as well as industry representatives. They share the latest scientific know-how, experiences and ideas … Continue reading
Posted in International, Medical staff talking, Research
Tagged Aniridia Europe, Conference, European Aniridia Conference, event, meeting
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