Author Archives: Aniridia Network

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About Aniridia Network

A charity support group for people with the genetic visual impairment aniridia and their families in the UK and Ireland. Our vision is that people with/associated with aniridia are hopeful, confident, supported and well informed regarding aniridia. Founded in 2000. First registered as a charity in 2011 and fully in 2018.

‘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

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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

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Further sight loss with aniridia research: participants wanted

People with aniridia are needed for a research study about worsening sight, whether you have dealt with it or may do in future. Aniridia usually results in low vision from birth. At some point conditions such as cataracts, glaucoma or … Continue reading

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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

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Posted in Aniridia Network news, Fundraising, Medical staff talking, National Institute for Health WAGR study, Other agencies, Parents' accounts, Patients' tales, Research | Tagged , , , , , | 9 Comments

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

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Annual General Meeting 2023

The Aniridia Network AGM will be held online on 13 August 2022 Continue reading

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Annual Report 2022-2023

Read details of what our officials, members and supporters did as well our finances between 1 April 2022 and 31 March 2023 in the Aniridia Network Annual Report for 2022/23. See also the Aniridia Network financial statements 2023 and their independent … Continue reading

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Meet up for Aniridia Day 2023

Seven peoople with aniridia came to the pub in St Pancras Station celebrate Aniridia Day together this year. The youngest was 19, the oldest 67. After buying them welcome drinks there’s was lots of great chat including about about studying … Continue reading

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A decade as Patron of Aniridia Network

In 2013 Veronica van Heyningen became Aniridia Network Patron. Having helped to appoint a new patron she reflects on the progress we’ve made together. Ten years ago when I took up the role of Patron in this wonderful aniridia support … Continue reading

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The diverse functions of PAX6: How Veronica grew our understanding

Our Patron Veronica van Heyningen worked at the Medical Research Council for more than 35 years. In that time she and her colleagues in Edinburgh did pinoneering work to undertand the PAX6 gene. They were identified it as the gene … Continue reading

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