Search
-
Become a member
-
Patients, parents and professionals in the UK/Ireland - join Aniridia Network for free to get specialised support for youself or those you care for.
-
-
Get news by email
-
Be alerted to our news about aniridia and charity activities by entering your email address.
- Join 128 other subscribers.
Tag Archives: event
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
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 meeting, event, Aniridia Day, Cardiff University
1 Comment
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
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
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
Leave a comment
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. London Euston Station: Starbucks: Aaron, Johnathan, Keith, James, Emily and children Cambridge: M&S Food Cafe, Market Hill: Tony, Andy, Laura, Anastasia and children … Continue reading
Management of glaucoma associated with aniridia
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 … Continue reading
Posted in Medical staff talking
Tagged Conference, Conference 2025, event, glaucoma, John Brookes, meeting
1 Comment
Can access to station information improve train travel for people with sight loss?
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 … Continue reading
Privilege, Protest, Power
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 … Continue reading
