“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 was held online, 1-4pm on Saturday 1 November 2025. We had wodnerful speakers, to talk about a range of aniridia-related issues: from personal experiences to cutting-edge research.

We recorded each of the sessions and expect to publish them later on YouTube when a volunteer is able to.

37 people came along and to meet others with aniridia, and the fantastic medical and scientific experts pushing forward our knowledge on aniridia.

Trustee and communication volunteer James, who organised and ran the event said

It was another great conference for Aniridia Network. On behalf of all our members, many thanks to all the speakers for the time and effort they put into presenting to us, and for the work that led up to it too.    

Agenda

• 13.00 Session 1
  • Welcome
• • How PAX6 gene deficiency affects your body – Professor Mariya Moosajee, Moorfields Eye Hospital
  • Brain development and the aniridia gene – Calvin Chan & Samuel Heczko, Edinburgh University
• 14.10 BREAK
• 14.20 Session 2
  • Privilege, Protest. Power – Elliott Lee, person with aniridia
• • Annual General Meeting 2025 – Aniridia Network trustees
  • Train station maps for visually impaired people – Emily Nash, person with aniridia
• 15.10 BREAK
• 15.20 Session 3
  • Management of glaucoma associated with aniridia – Mr John Brookes
• 15.50 Open discussion

Get in touch if you can play a part in next year’s event, particularly if you are willing to help make it be in-person!

How PAX6 gene deficiency affects your body
Professor Moosajee, Moorfields Eye Hospital

It is now accepted that reduced PAX6, caused by genetic changes involving this gene, does not just affect the eye (causing aniridia) but has an impact on many other organs of the body. In this talk, I will expand on the impact of PAX6 outside the eye, and expand on insights gained from looking at all the metabolites in the blood of aniridia patients (compared to unaffected age and gender matched control individuals).

Professor Mariya Moosajee is a clinician scientist, she is a Consultant Ophthalmologist specialising in Genetic Eye Disease and Head of the Genetics Service at Moorfields Eye Hospital, Professor of Molecular Ophthalmology at UCL Institute of Ophthalmology, and Group Leader of Ocular Genomics and Therapeutics at the Francis Crick Institute, London.
@MariyaMoosajee on Threads
@profmariya on Blue Sky

Exploring PAX6 related gene regulatory networks & its role in the developing brain
Samuel Heczko & Dr. Wai Kit (Calvin) Chan, University of Edinburgh

We all come from a single cell. But how does this cell know when and how to divide into a brain? And how does the aniridia associated gene PAX6 guide this process?

Samuel is a Phd student of developmental neuroscience under the supervision of Dr Chan. Samuel on LinkedIn.

Dr. Wai Kit (Calvin) Chan is a Research Fellow at the Centre for Discovery Brain Sciences. His research focuses on the molecular and cellular mechanisms underlying forebrain development and pathology, particularly in the context of human neurodevelopmental disorders. He is currently investigating PAX6 haploinsufficiency using advanced organoid and assembloid models, employing techniques such as single-cell RNA sequencing, immunofluorescence, and electrophysiology.

Privilege, Protest. Power
Elliott Lee, person with aniridia

Identifying privilege, embracing protest, 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 the most marginalised has morphed into a passion, although that has only been possible through recognising my own vulnerabilities and taking part in civil resistance. Aniridia has shaped who I am, and I have driven that into a vision for a future that carries hope and dignity for all.

Elliott is a social activist and political campaigner who champions the most vulnerable. From a shy kid to a vocal advocate, he fearlessly confronts hate, the political status quo, and even has an arrest under his belt (From protesting). Mission? ensure every voice is given its place at the table.

Annual General Meeting 2025
Aniridia Network trustees

At the annual general meeting the trustee’s will seek approval of the minutes of last year’s meeting, then present highlights from the charity’s annual report, giving time for questions and comments. The results of the trustee election will also be announced.

Can access to station information improve train travel for people with sight loss?
Emily Nash, Coventry University

My research is looking to identify and understand what barriers currently exist and find solutions to improve access. I will talk about how interviews and a usability study are helping achieve this.

Emily Nash lives in South Wales with her two children and they all have aniridia. Emily is currently completing a PhD in improving access to train travel for people with sight loss. She presented at the 2023 conference about her lived experience and the plans for her research.
Emily has been a member of Aniridia Network since 2015 and was a Trustee when she first joined.
Emily Nash on LinkedIn

Management of Glaucoma & Aniridia
Mr John Brookes, Moorfields Eye Hospital

A presentation about aniridia issues, particularly regarding how glaucoma is treated in children and adults with aniridia, from medical to laser and surgery.

Mr Brookes trained in London and qualified in 1993, subsequently specialising in ophthalmology and further, in paediatric glaucoma, for which he has been a consultant at Moorfields Eye Hospital since 2004. His main interest is in secondary glaucomas in children, such as aniridia and their surgical management