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Category Archives: Patients’ tales
Being A Carer
Glen is documenting his and his mum’s journey in the hope that it raises awareness of the impacts of going blind, having falls and other effects of old age. Continue reading
The line running to and from Moorfields
By Sinead who has aniridia The other day, we travelled to Moorfields Eye Hospital in London to try to save the tiny bit of eyesight my sister has left. We were hoping beyond hope. When you get off the Tube … Continue reading
Privilege, Protest, Power
Talk by Elliott, person with aniridia at Conference 2025 “Identifying privilege, embracing protest and challenging power have all been integral to a journey these 25 years that I could not have imagined. “Fighting for a seat at the table for … Continue reading
Conference 2025
“I found it very informative and took things from each of the talks that I feel like could use going forward to inform my own family and myself when dealing with our healthcare” Attendee Our main event of the year … Continue reading
Posted in Aniridia Network news, Medical staff talking, Patients' tales, Research
Tagged Conference, Conference 2025, event, meeting
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In memory of Miriam Ibberson
The Art Of Giving In life we all want to do something special, to be remembered for doing or saying it. MiriamIbberson was no different. Born Miriam McKay in 1975 Greenock, Scotland she grew up with purpose, from a young … Continue reading
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
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