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Author Archives: Aniridia Network
Shape the RNIB aniridia factsheet
We have an opportunity to make what RNIB publishes about aniridia as good as possible. They want your valuable input on their online information. Read and critique it. What is needed RNIB maintains details on its website about various eye … Continue reading
WAGR Weekend 2025
Several of our members affected by WAGR enjoyed meeting in Sussex recently Parents Aaron and Michelle brilliantly organised the 2 day event with International WAGR Syndrome Association (IWSA). Aniridia Network trustee James went along to speak with people and fly our flag. Nearly everyone with WAGR has aniridia. Continue reading
Posted in Medical staff talking, Other agencies, Research
Tagged event, IWSA, Mariya Moosajee, Ngozi Oluonye, WAGR
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New Medical Advisors
We have appointed two distinguished medical experts to continue our support for the aniridia community. Mr John Brookes and Professor Mariya Moosajee are now our medical advisors, ready to respond to enquiries from our members and their families. Both are … Continue reading
Posted in Aniridia Network news
Tagged John Brookes, Mariya Moosajee, medical panel, volunteering
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Skydive total soars to over £960
Oliver, who has aniridia, celebrated his 18th birthday by leaping out of a plane to raise money for Aniridia Network. To mark becoming adult, Oliver took the skies for a tandem parachute jump. He got friends and family to sponsor … Continue reading
Apply for our 2nd grant for UK aniridia research
Apply for a £15k grant to collect preliminary/pilot data for later research into congenital aniridia. Continue reading
Kiltwalk raises £1022
The feet of a Scottish family achieved the feat of earning over a thousand pounds for our charity. They took part in the 14.5 mile ‘Big Stroll’ Kiltwalk in Glasgow, starting at Clydebank and at Balloch. They were inspired by … Continue reading
Posted in General
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In memory of Miriam Ibberson
The Art Of Giving In life we all want to do something special, to be remembered for doing or saying it. MiriamIbberson was no different. Born Miriam McKay in 1975 Greenock, Scotland she grew up with purpose, from a young … Continue reading
Kiltwalk for aniridia
Craig, Katie and Mollie are tackling the 14 mile Kiltwalk to raise money for Aniridia Network and need you to sponsor them. Molie’s brother and step dad both have aniridia but they are doing this “for everyone else who has … Continue reading
Q&A with girl with aniridia
Lacey has put out a great video of her answering questions about her life with aniridia. In a rare outing on YouTube Lacey is 18 and studying at university in the UK and one of our members. They responded to … Continue reading
Meet up for Rare Disease Day
We held two great friendly gatherings to celebrate Rare Disease Day 2025 with patients and their relatives. The first was online on Friday evening. 11 peole joined in. For up to 2 hours they discussed their personal stories about living … Continue reading
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