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Category Archives: Campaigns
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
Posted in Campaigns, Patients' tales
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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
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
Travel insurance for people with aniridia
We are often asked: ”Do I need to declare aniridia when applying for travel insurance?” This is often accompanied by outcry at an exorbitant quote when doing so. Regular travel insurance companies often charge a hefty premium to cover medical conditions. … 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
Posted in Campaigns, Fundraising, Patients' tales
Tagged fundraising, IrisSelfie, rare disease, rare disease day
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