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Category Archives: Campaigns
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
Posted in Campaigns
Tagged conference, conference 2018, nystagmus, nystagmus network
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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
Take a (No) #IrisSelfie to raise awareness and funds for aniridia
We want to raise awareness of aniridia, help those who are visually impaired because of it, and support treatment research. So we want you to post a photo of your eye, WITH or WITHOUT an iris on Twitter / Facebook / … Continue reading
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Combating overhaning branches
I’ve got an idea in my head to do something about plants that obstruct the pavement. I’m fed up with ducking, flinching or actually getting scratched by the branches or leaves of things growing in people’s front gardens. That’s my … Continue reading
Prepare for Rare Disease Day: Wednesday 29 February 2012
Rare but strong together A rare medical condition affects less than 1 in 2000 people. Aniridia affects about 1 in 100,000 people. Even fewer have WAGR/11p deletion syndrome making it ultra-rare. But collectively people who have rare conditions are not … Continue reading
Bring rare diseases to the attention of your local politicians
Aniridia Network UK recently joined Rare Diseases UK, an alliance of industry, patient organisations and individuals developing strategic planning for rare diseases in the UK. The European Union defines a rare disease as a disorder which affects 1 in 2000 … Continue reading
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