Monthly Archives: April 2011

Pig & Pimms Garden Party in aid of Shine The Light On Aniridia

By Elly Chappele Shine The Light On Aniridia has been been raising funds to enable research for a cure for Aniridia to begin this year. we hope, at Moorfields Eye Hospital in London under Dr Julie Daniels and her team. … Continue reading

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Taking part in research into aniridia, hearing and memory

In the Summer 2010 Aniridia Network UK newsletter there was a call to take part in research into the effect of the aniridia gene (PAX6) on the parts of the brain that deal with hearing and memory. Having done some … Continue reading

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We are now an official charity

Aniridia Network UK is extremely pleased to announce that we have been recognised as a charity. Our reference number is XT26830. It is a big step forward as it gives us an additional level of respectability and other benefits. HM … Continue reading

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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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James’s introduction

I’m James, a born (1979) and bred Londoner. I have sporadic aniridia. My vision is (6/24 6/36) and I’m a trustee for Aniridia Network UK. Continue reading

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Protected: 2011 Annual General Meeting and trustee’s plans

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Diagnosis difficulties – a father’s experience

Fuad and daughter Shakila If you follow Aniridia Network UK on Facebook you may have already read the story of Fuad and his daughter Shakila featured in these articles Article in The Voice Article in The Standard Article in The … Continue reading

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Posted in Parents' accounts | 2 Comments