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Category Archives: Other agencies
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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Conference 2023 review
We held our first in-person conference for 4 years on 2 September 2023 at the Library of Birmingham. It was good to be back together after the pandemic – well, if you were able to get there! Many were: despite … Continue reading
Down Syndrome Act could negatively affect support for WAGR
An alert from Genetic Alliance UK warned us about the potential impact of new legislation called the Down Syndrome Act. It raised the prospect of people with Down syndrome being treated better than others with similar learning difficulties, caused by … Continue reading
Attending the Genetic Alliance Conference 2017
Today Genetic Alliance held their Annual Conference in London, entitled “Upskilling Our Members”, with many charities taking part. Aniridia Network trustee James Buller attended the event, taking the opportunity to engage with many leaders of charities very similar to our … Continue reading
Screening embryos for aniridia available in UK
It is now possible to avoid passing on aniridia to children using a procedure called pre-implantation genetic diagnosis (PGD) How did PGD become available for aniridia in the UK? The Human Fertilisation & Embryology Authority (HFEA) maintains a list of … Continue reading
Posted in Medical staff talking, Other agencies
Tagged Genetic Alliance UK, genetics, HEFA, PGD
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Meet-up in Newcastle
From 5pm 9 May 2015 Rendezvous Bar, County Hotel, Neville Street, Newcastle-Upon-Type, NE1 5DF Everyone affected by aniridia: patients, relatives, doctors, teachers etc was invited to join us in to find out more about each other and discuss aniridia related topics. … Continue reading
Invitation to aniridia youth summer camp 2015 in Italy
Registration deadline 1 February 2015 Aged 15-25 and have aniridia? Parent or sibling of such a person? You are invited to a fabulous activity holiday in Italy with 80 others from around Europe. The camp will run 4-14 August 2015 and will … Continue reading
Posted in Aniridia Network news, Other agencies
Tagged Aniridia Europe, event, Youth In Action Summer Camp
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Lois leads England Women Blind Cricket Team
Lois who has aniridia is captain of the England Women’s Blind Cricket Team. They are currently on tour in Nepal. Before they left, she and others were interviewed by BBC Radio 4 In Touch The Nepalese cricket team inspired the Cricket … Continue reading
Teenager with aniridia coaches other disabled children
Lois, 16 who has aniridia has been made a lead sports coach by The Change Foundation. She is teaching others to play cricket The Change Foundation believes in changing lives through sport and are running a project that gives disabled … Continue reading
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