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Author Archives: Aniridia Network
Research Preview: What is the impact on family members of aniridia diagnosis in a child?
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 … Continue reading
Posted in Parents' accounts, Patients' tales, Research
Tagged Aniridia Day, event, meeting
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Grace wins Child of Sussex award
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 … Continue reading
Empathising with my son – Raising a child with anirida when you have it too
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 … Continue reading
Looking Back on Aniridia – 30 Years of Learning
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 … Continue reading
Glass half empty? We can’t see the glass anyway!
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 … Continue reading
Parenting and aniridia: Online meet up
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. Continue reading
Be a leader of Aniridia Europe 2026-28
Aniridia Europe is recruiting volunteers to be directors, to lead and carry out its activities for the next 2 years. It’s an important and exciting role where you can influence the support provided to aniridia researchers, doctors, associations and patients, across … Continue reading
Attending the 8th European Aniridia Conference as a professional
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. Continue reading
Posted in International, Medical staff talking
Tagged Aniridia Europe, Conference, European Aniridia Conference, event
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Meet-ups for Rare Disease Day 2026
We held 4 friendly online/in-person gatherings of patients and their relatives to celebrate Rare Disease Day 2026. It can be hard having a rare disease and feeling like you are navigating this journey alone. So we enjoy talking to ask … Continue reading
Bursary for UK professionals to attend European Aniridia Conference 2026
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 … Continue reading
Posted in Aniridia Network news, Research
Tagged European Aniridia Conference, grant
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