When your child has a rare condition, knowing that you are not alone makes a real difference. Seeing that another mother or father once asked the same questions you are asking today reminds you tha…

Read details of what our officials, members and supporters did as well our finances between April 2025 and March 2026 in the latest Aniridia Network Annual Report

The Annual General Meeting (AGM) of Aniridia Network, a charitable incorporated organisation, will be held online on 28/11/2026.

During our online meetup earlier this year to mark Aniridia Day and Father’s Day, we were given a preview of an important new research project. Harriet, an MSc Genetic Counselling student fro…

During our online meetup earlier this year to mark Aniridia Day and Father's Day, we were given a preview of an important new research project. Harriet, an MSc Genetic Counselling student from Cardiff University, is preparing to conduct a study with Aniridia Network, which will ask the question: "What is the impact on family members of the diagnosis of aniridia in a child, and what would help?

Congratulations to Grace, who has WAGR and won the local Child of Sussex awards in June. She was nominated by her school, and then got through to the final 50 nominees. She won her category of Children's Champion being recognised for her resilience, kindness, positivity and her shining light.   Grace is the daughter of Aaron and Michelle who are International WAGR Syndrome Association…

New clinical trial data suggest that RAFT-OS transplant offers a potential regenerative treatment strategy in advanced ARK.

At our recent online meetup to mark Aniridia Day and Father's Day, we heard from Simon, 43, who has aniridia and is bringing up a child with the same condition. In his talk he shared what it’s like to navigate aniridia from both sides. His son is going through many of the same things that he did growing up, yet the world has also changed and many of the challenges are new or different.

This year's Aniridia Day on 21 June coincided with Father's Day. So we held a special online meet up to explore parenting topics, with 3 short talks and an open discussion. One of the talks was by Mark, 62, who has spent almost three decades supporting his son Harry, 29, who has aniridia. Mark reflected on what he has learned over that time, from Harry's diagnosis through his childhood, school, and into adulthood — and the highs and lows along the way.

By Robert, who has aniridia You have probably been asked this question before: Are you a glass-half-full or a glass-half-empty person? Well, let me rephrase that for our community. Are you a person living in a society that isn't built for you? Or are you a person that isn't built for the society around you? As a rule, I would say we with aniridia are all people who were simply not built for the design of the world around us.

Join us for an evening to mark Aniridia Day and explore parenting topics with 3 short talks and an open discussion for everyone. Learning your child has aniridia brings a range of thoughts and emotions. The effects on parents are not talked about enough, especially regarding men. We'll explore these topics.

8th European Aniridia Conference

8th European Aniridia Conference

ERN-EYE Webinar - Congenital aniridia PAX6 and differential diagnosis Date & time Tuesday 23 June 2026, 6.00 pm CEST. Moderators Pr Dominique Bremond-Gignac & Dr Susana Noval Programme & Speakers…

This diagnostic study aims to determine whether optical genome mapping and long-read whole-genome sequencing can identify a pathogenic structural variant disrupting PAX6 in an individual with classic aniridia after negative standard clinical and short-read genomic testing.

Join us for an evening to mark Aniridia Day and explore parenting topics with 3 short talks and an open discussion for everyone. Learning your child has aniridia brings a range of thoughts and emot…

Aniridia Europe is recruiting volunteers to be directors, to lead and carry out its activities for the next 2 years. Fill in a form by midday 21 June to apply for one of the 9 postions. It’s an important and exciting role where you can influence the support provided to aniridia researchers, doctors, associations and patients, across Europe and beyond. Together the directors discuss issues and take decisions about what the organisation does.

Join us for an evening to mark Aniridia Day and explore parenting topics with 3 short talks and an open discussion for everyone. Learning your child has aniridia brings a range of thoughts and emot…

Join us for an evening to mark Aniridia Day and explore parenting topics with 3 short talks and an open discussion for everyone. Learning your child has aniridia brings a range of thoughts and emotions. The effects on parents are not talked about enough, especially regarding men. We'll explore these topics.

This diagnostic study aims to determine whether optical genome mapping and long-read whole-genome sequencing can identify a pathogenic structural variant disrupting PAX6 in an individual with classic…

Nicky, an ophthalmology registrar and PhD student, attended the 8th European Aniridia Conference in Sofia, Bulgaria, thanks to Aniridia Network's support. The three-day event brought together clinicians, researchers, and families to discuss various aspects of aniridia, while incorporating patient experiences into the dialogue. Notable discussions included cutting-edge research on stem cells and targeted therapies for aniridia-associated keratopathy, showcasing promising developments. Nicky valued the chance to connect with global researchers, exchanging ideas that could enhance current and future projects. Overall, the conference inspired Nicky to provide more tailored support to patients moving forward.

James’s story of a sudden loss of vision, leading to an urgent visit to hospital. eye surgery and recovery.

Congenital aniridia is a rare disease caused, in most cases, by mutations in the PAX6 gene, which is essential for the development of ocular structures. Although the most visible feature is the total…

We warmly invite you to friendly online and in person gatherings of patients and their relatives to celebrate Rare Disease Day. Use the links to sign up and add them to your calendar Saturday, 28 F…

We warmly invite you to friendly online and in person gatherings of patients and their relatives to celebrate Rare Disease Day. Use the links to sign up and add them to your calendar Saturday, 28 F…

We warmly invite you to friendly online and in person gatherings of patients and their relatives to celebrate Rare Disease Day. Use the links to sign up and add them to your calendar Saturday, 28 February 2026 2.00pm London Euston Station: Starbucks 2.00pm Manchester: Piccadilly Tavern 3.00pm Cambridge: M&S Food Cafe, Market Hill 7.30pm Online via Google Meet: To discuss equity in medical care…

We warmly invite you to friendly online and in person gatherings of patients and their relatives to celebrate Rare Disease Day. Use the links to sign up and add them to your calendar Saturday, 28 F…

We warmly invite you to friendly online and in person gatherings of patients and their relatives to celebrate Rare Disease Day. Use the links to sign up and add them to your calendar Saturday, 28 February 2026 2.00pm London Euston Station: Starbucks 2.00pm Manchester: Piccadilly Tavern 3.00pm Cambridge: M&S Food Cafe, Market Hill 7.30pm Online via Google Meet: To discuss equity in medical care…

Aniridia Network is offering to fund UK professionals to take part in this year's European Aniridia Conference (EAC), 17-19 April in Sofia, Bulgaria. EAC enables the sharing of scientific knowledge about the rare genetic eye condition aniridia. Its goal is to prevent sight loss and deal with aniridia’s effects. It brings together patients and the world’s top experts to upskill the clinical, research and aniridic communities.

Record speech, music and sound effects. Voice recordings are played back via the built-in speaker. Combine speech, music and sound effects, together with your photos to create a unique and very…

Talk by Mr John Brookes, Moorfields Eye Hospital, at Conference 2025 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.

Talk by Emily Nash, Coventry University, at Conference 2025 Emily Nash is currently completing a PhD in improving access to train travel for people with sight loss. Her research is looking to identify and understand what barriers currently exist, and find solutions to overcome them. In this talk, she explains how interviews and a usability study are helping achieve this.

Parents discuss what it is like to bring up a visually impaired or blind child in 2025.

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 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.

Are you aged 18 to 40? Do you want to improve how you work with people to achieve greater success? Will you help enhance the lives of people affected by aniridia? Come to Bulgaria in April 2026 for the 'European Aniridia Leadership and Collaboration Academy'. We're seeking people with and without aniridia to join a 3-day event aiming to raise your:

Talk by Samuel Heczko & Dr. Wai Kit (Calvin) Chan, University of Edinburgh at Conference 2025 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? In this talk we learn about some fascinating research looking for answers to those questions.

Talk by Professor Moosajee, Moorfields Eye Hospital at Conference 2025 Dr Mariya Moosajee It is now accepted that reduced PAX6, caused by genetic changes involving the gene, does not just affect the eye (causing aniridia) but has an impact on many other organs of the body. In this talk, Professor Mariya Moosajee explains the impact of PAX6 outside the eye, and expands on insights gained from looking at all the metabolites in the blood of aniridia patients.

"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.