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Category Archives: Campaigns
Rare Disease Day 2024
300 million people worldwide are living with a rare disease, including 3.5 million (1.6%) in the UK. There are over 7,000 rare diseases, one of these being aniridia. February 29 is Rare Disease Day, a time to raise awareness and … 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
Share your aniridia story on Rare Disease Day 2021
Share stories of how aniridia impacts their your life, to raise awareness Continue reading
Rare Disease Day 2020 Meetup
Rare Disease Day is always a very good opportunity to bring people together and raise further awareness of aniridia. To mark the occasion, trustee Eleanor Burke hosted an aniridia meetup at Wynn’s Hotel in Dublin on Saturday 29 February 2020, … Continue reading
Celebrating Difference book crowdfunder
A crowdfunding campaign is underway to publish a book featuring children with rare conditions, including two with WAGR 11p Deletion Syndrome. Give the book your support and get a copy. The proposed book is the result of a photography project … Continue reading
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Aniridia Day 21 June 2019
On this year’s day for improving understanding of aniridia around the world, we want you to focus on possibilities: tell everyone what it is possible to do with a visual impairment come together to show there are similar people nearby … Continue reading
Nystagmus Network & Awareness Day
Many people with aniridia also have nystagmus, and this year’s Nystagmus Awareness Day will take place on 20th June – the day before Aniridia Day! The Nystagmus Network have celebrated Wobbly Wednesday in November since 2013, but this year they have permanently … Continue reading
Aniridia poem competition UK results
We are elated to announce the winner plus the awarding of a special prize in our Aniridia Day related poetry competition. “I was impressed with the outstanding talent.” said judge and new trustee Emily. We were delighted to receive 10 … Continue reading
Posted in Campaigns, Parents' accounts, Patients' tales
Tagged Aniridia Day, AniridiaPoem
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Win up to £40 in the aniridia poetry competition
Write a poem about your experience of aniridia, then send it to us and you could win shopping vouchers worth £40! Join us in taking part in the international poetry competition to celebrate the first world Aniridia Day on 21 June. … Continue reading
Launch of Aniridia Day: 21 June 2017
Join us celebrating the first ever international Aniridia Day on 21st June 2017! What is it? It will be a exciting time to coordinate activities and improve understanding of the rare genetic eye condition aniridia. Please take part in the campaigns: … Continue reading
Aniridia Network 