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Tag Archives: event
Conference 2025
“I found it very informative and took things from each of the talks that I feel like could use going forward to inform my own family and myself when dealing with our healthcare” Attendee Our main event of the year … Continue reading
Posted in Aniridia Network news, Medical staff talking, Patients' tales, Research
Tagged Conference, Conference 2025, event, meeting
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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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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
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