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Author Archives: Aniridia Network
Meet-ups in Blackpool and London in October
Whether you’re an aniridia patient, caregiver, researcher, educator or doctor, join us to talk about it in Blackpool and London. Continue reading
Karsu’s story – The beginning of our aniridia journey
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 that your child’s future is about much more than medical reports and test results. Continue reading
Annual Report 2025-2026
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 Continue reading
Annual General Meeting 2026
The Annual General Meeting (AGM) of Aniridia Network, a charitable incorporated organisation, will be held online on 28/11/2026. Continue reading
Posted in Aniridia Network news
Tagged AGM, Annual General Meeting, Conference, Conference 2025, meeting, trustees
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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, Cardiff University, 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
