Tag Archives: Conference 2023

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

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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

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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

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Amlexanox rescues PAX6 levels in aniridia stem cell-derived models

Dulce Lima Cunha is a postdoctoral researcher from UCL Institute of Ophthalmology, currently working at Radboud University in the Netherlands. Last year she published the results of a study demonstrating that Amlexanox rescues PAX6 levels in aniridia stem cell-derived models, … Continue reading

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Natural history of aniridia: a genotype-phenotype study of 86 aniridia patients with PAX6 mutations

In 2021, the results of a significant study were published by Vivienne Kit, Dulce Lima Cunha, Ahmed M. Hagag and Mariya Moosajee. It assessed 86 aniridia patients with a variety of mutations in the PAX6 gene, through the retrospective review … Continue reading

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Patrons looking backwards and forwards, and Lifetime Achievement Award for Veronica

We honoured the huge impact Veronica van Heyningen has had on our understanding of aniridia at our recent annual meeting. After a distingushed career growing understanding of the diverse functions of the PAX6 gene that often causes aniridia, Veronica has … Continue reading

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‘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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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