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Author Archives: Aniridia Network
Meet ups for Rare Disease Day 2023
Seventeen people were at our get togethers last weekend to celebrate Rare Disease Day, in London and Cambridge. They came to meet fellow aniridia patients and relatives to chat about all aspect of aniridia. Andy hosted the Cambridge event in the … Continue reading
My first aniridia meet up
After moving to London, I stumbled across Aniridia Network (AN) and decided to sign up. All my well laid plans to get involved, however, fell to the wayside as I got distracted by PhD study, making new friends, and getting … Continue reading
Finlay is England Rugby Union mascot
A boy with aniridia served as the mascot of the England rugby team at their game with South Africa. He proudly led the team out on to the pitch at Twickenham today. Finlay’s godparent moninated him following a call by … Continue reading
Posted in Parents' accounts, Patients' tales
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Meet up & stall after/at Sight Village London
We held a wonderful meet up of people affected by aniridia in Kensington. It was after the Sight Village exhibition where we had a stall. It was a brilliant day and evening where we talked about all aspects of aniridia … 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
Internet & social media research study: participants wanted
Emily Sterling, a Masters student from the Cardiff University Centre of Medical Education, is looking for adults with aniridia to take part in a research study about their use of the internet and social media. Emily has provided the information … Continue reading
2022 Volunteer Awards
We rely completely on the brilliant people who use their spare time and skills to run our charity. We are so thankful for the efforts of all our volunteers and hence what they get done for our beneficiaries. To aknowledge … Continue reading
2022 Annual General Meeting
The Aniridia Network AGM will be held online on 13 August 2022 Continue reading
Posted in Aniridia Network news
Tagged AGM, Annual General Meeting, Conference, meeting, trustees
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Conference 2022
Our main event of the year took place online today. People from all arond the UK, Ireland and beyond joined via Zoom to hear and talk about various aspects of aniridia. There reactions were heartening: I’m very grateful for all … Continue reading
Annual Report 2021-2022
Read details of what our officials, members and supporters did as well our finances between 1 April 2021 and 31 March 2022 in the Aniridia Network Annual Report for 2021/22. See also the Aniridia Network financial statements and their independent examination … Continue reading
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