Category Archives: Uncategorized

Milkshakes fund rare disease charities

  A business has found an alternative way of raising money for our charity to shaking collection tins – shaking milk! The Pour House in Shrewsbury opened in 2015 as a coffee house by day and cocktail bar by night. … Continue reading

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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

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Gleb ‘s Living with aniridia video

By Gleb Transcript Hi guys. My name is Gleb and today I’m going to talk about aniridia and my life basically So I have aniridia. For those who don’t know, what aniridia is. it is the inherited sporadic eye disease … Continue reading

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Serena and Violet with anirida and thier mums make friends

I met Dawn and Serena at an event held at Eureka Museum in Halifax aimed at visually impaired children. I recognised her from an Aniridia Network UK conference we had both attended in previous years, So at I approached her … Continue reading

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Hannah’s rare story

Today is the rarest of days , so what better day to raise awareness of rare conditions and the people that live with them every day. I am 1:47,000 which makes this 1:1401 day (365×4+1) sound common. What makes me … Continue reading

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Thanks to Dassault for technical donation

A big thank you to Dassault Systems for donating audio visual equipment to Aniridia Network UK. Tony and colleagues, working in Warrington took part in a challenge to buy an item for up to £200 for a charity. He remembered our … Continue reading

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Review of Newcastle Conference 2015

By Sarah, part of the Conference committee  Preparing and planning Organising for a conference is a bit like making a large purchase. You do your research, ask people who can help and enlist the help of a fried or two, Once you … Continue reading

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