Category Archives: Parents’ accounts

Bringing up children with aniridia and the feelings it generates.

A parent’s experience of our befriending scheme

To mark Rare Disease Day 2013 we have a story of just how incredibly helpful it is to bring people affected by a rare disease together. A parent contacted our befriending scheme last November. She has two children, the youngest being … Continue reading

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Meet-up in Newcastle 24 February 2013

People in North East England affected by aniridia came together in on Sunday 24 February for lunch and chat and fun. The lunchtime meet-up was in Zizzi in Metrocentre, Newcastle Partners, family and friends of people affected by aniridia were all … Continue reading

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Watching TV

Recently a parent put the photograph below on Facebook and asked “Does anyone with or child with aniridia sit this close to the TV to watch it?” There was a great set of responses, from all over the world, which … Continue reading

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Protected: Presentations from Conference 2012

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Sunglasses wearing dog has aniriida

Isn´t this dog cute, with its sunglasses? She has aniridia! Rosa from the Spanish aniridia association happened to meet, Ana, a generous person who adopted this abandoned dog as her pet – nobody else wanted it because it had aniridia. It is now happy with sunglasses … Continue reading

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Peter and Lyn include Aniridia Network UK in their wills

By Peter and Lyn Having recently retired, our thoughts turned to updating our wills. We have always been extremely grateful for the support and advice we received from others when our son James was diagnosed with aniridia back in 1979. Back … Continue reading

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Invitation to the Oslo Aniridia Conference

Aniridi Norge (the Norwegian aniridia association) has organised the first European scientific conference about aniridia as well as an international gathering for the aniridia community. You are invited between 8 and 10 June 2012. James and Katie from Aniridia Network … Continue reading

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Natasha and Violet: fundraising and media stars

  Natasha, mum to Violet with aniridia responded to our calls for fundraising and media volunteers. She’s been holding raffles and selling goods via Facebook in her home town of Halifax, West Yorkshire. The current drive is for Easter eggs … Continue reading

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Harry wins teen “Caring For Others” award

A boy with aniridia has won an award for his caring nature. Harry, 16, from the Exeter area won the “Caring For Others” category in the Teen Awards run by the Exeter Express & Echo newspaper. The awards “show that teenagers … Continue reading

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Protected: On your bike

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