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Author Archives: Aniridia Network
Meet up for Rare Disease Day
We held two great friendly gatherings to celebrate Rare Disease Day 2025 with patients and their relatives. The first was online on Friday evening. 11 peole joined in. For up to 2 hours they discussed their personal stories about living … 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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Be a part of cutting-edge brain and aniridia research
Living with aniridia and want to make a difference? Help a student with a groundbreaking research project! About the project Sam is a Phd student at University of Edinburgh. Before they did research at Max Planck Institution. They are diving … Continue reading
Online meet up for Rare Disease Day
To mark Rare Disease Day, we hosted a special online meet-up for the UK aniridia community! Most people there were adults with aniridia, both sporadic and familial. There was also a parent with an aniridic child, and a scientist. They … Continue reading
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
3D corneal organoids for disease modelling and limbal stem cell deficiency cell therapy research
Dulce Lima Cunha is a postdoctoral researcher from UCL Institute of Ophthalmology, currently working at Radboud University in the Netherlands. Currently, her main research interests are uncovering rare disease mechanisms using induced pluripotent stem cell (iPSC)-derived 2D and 3D models … Continue reading
Posted in Medical staff talking, Research
Tagged Conference, Conference 2024, cornea, Dulce Lima Cunha, Limbal stem cells, research
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Retinal detachments in Aniridia research at Moorfields
Vivienne Kit is an Ophthalmology Researcher at UCL Institute of Ophthalmology. In addition to her clinical duties, she is pursuing a postgraduate research degree in aniridia under the supervision of Professor Mariya Moosajee. In 2021, Vivienne and her team published … Continue reading
Posted in Medical staff talking, Research
Tagged Conference, Conference 2024, Moorfields, PAX6, research, retinal detachment, Vivienne Kit
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Progress on developing eyedrops to treat aniridia-associated keratopathy
Professor Martin Collinson is based at The Institute of Medical Sciences in the University of Aberdeen, and has been working on the roles of the PAX6 gene in eye development and adult life for over 25 years. He enjoys opportunities to … Continue reading
Posted in Medical staff talking, Research
Tagged Conference, Conference 2024, cornea, keratopathy, Martin Collinson, PAX6, research
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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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Supporting children with aniridia in education
Gayle Johnson is a Qualified Teacher For Vision Impairment (QTVI) in the Vision Support Service at Dorset Council. Through her career in education as a Special Needs Coordinator and Senior Leader, and now in her current role as a QTVI, … Continue reading
Posted in Education professionals sharing
Tagged Conference, Conference 2024, young people
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