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Category Archives: Patients’ tales
Q&A with girl with aniridia
Lacey has put out a great video of her answering questions about her life with aniridia. In a rare outing on YouTube Lacey is 18 and studying at university in the UK and one of our members. They responded to … Continue reading
Having aniridia in Gibraltar
Eloise was the first person born in Gibraltar with aniridia – which given the sunny weather there must be a challenge! She is part of the committee of the Gibraltar Society for the Visually Impaired (GSVI) When yonger, Eloise got … Continue reading
Posted in Patients' tales
Tagged Eloise Durante, gibraltar, podcast, rare disease, rare disease day
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Taking part in the European Aniridia Leadership Academy – Good things come to those who hustle
Haya Hassan is a 25-year-old woman from Wiltshire with sporadic aniridia. She graduated from university 2 years ago and has since been working in different charities, including a major UK sight loss charity. Some of her interests include reading, travelling … Continue reading
Results of research into the impact of sight loss between adults with sporadic and familial aniridia
Helen Campbell has recently finished studying for her MSc in Genetic and Genomic Counselling at Cardiff University School of Medicine, and works as an Eye Care Liaison Officer (ECLO) for RNIB. Prior to that, she worked in the charity sector … Continue reading
Posted in Patients' tales, Research
Tagged Cardiff University, Conference, Conference 2024, Helen Campbell, psychosocial, research
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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
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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
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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: transformational empowering liberating gave a feeling of solidarity and is ever evolving During the past year, a Cardiff University masters student studied the … Continue reading
Posted in Patients' tales, Research
Tagged Cardiff University, Conference, Conference 2023, social media
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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
