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Tag Archives: event
Online meet up for Rare Disease Day
To mark Rare Disease Day, we hosted a special online meet-up for the UK aniridia community! Most people there were adults with aniridia, both sporadic and familial. There was also a parent with an aniridic child, and a scientist. They … Continue reading
Meet up in Kensington after Sight Village 2024
Twelve people joined us for dinner and chat about aniridia on 5 November. This included an American woman who has recently move to London for work and another long-lost member as well as several regulars. It was immediately after the … Continue reading
Conference 2024
We held this great event online and it was completely FREE to attend. We had a great line up of speakers, to talk about aniridia related themes. From personal experiences to cutting edge research, education and leadership – something for … Continue reading
Meet up to mark Rare Disease Day
18 members came to one of 4 meet ups around England to celebrate international Rare Disease Day 2024. They got to meet fellow aniridia patients and relatives to chat about all aspect of aniridia. As always it was a wonderful … Continue reading
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
Meet up for Aniridia Day 2023
Seven peoople with aniridia came to the pub in St Pancras Station celebrate Aniridia Day together this year. The youngest was 19, the oldest 67. After buying them welcome drinks there’s was lots of great chat including about about studying … Continue reading
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
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
Meet ups for Aniridia Day 2022
Four gatherings of people affected by aniridia were held around the UK to celebrate this, Aniridia Day. Adults with aniridia hosted the get-togethers. Fellow patients, parents, children, came along to chat about life with our condition. Aniridia Network also bought … Continue reading
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