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Category Archives: Parents’ accounts
The doctor told me my newborn baby girl was blind
Have you ever been punched in the gut? Punched so hard that you can’t breathe, that you’re nauseous and you can’t think of anything but the shock? That’s exactly how I felt on December 12, 2011 when the doctor told … Continue reading
Protected: Presentations from Conference 2012
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Posted in Aniridia Network news, Education professionals sharing, Medical staff talking, Parents' accounts
Tagged Conference, fundraising, glaucoma, QTVI
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Sunglasses wearing dog has anirida
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
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
Posted in Fundraising, Parents' accounts
Tagged fundraising, legacy, regular donation, will
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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
Posted in Medical staff talking, Parents' accounts, Patients' tales, Research
Tagged Aniridi Norge, Conference, meeting, Oslo
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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
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
Protected: On your bike
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Posted in Parents' accounts, Patients' tales
Tagged achievements, sport
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Thoughts on the Special Educational Needs & Disability Green paper
I (Laura) recently attended parent consultation meetings run by NBCS/RNIB on the Government’s reform proposals in the Special Educational Needs & Disability (SEND) Green paper. It leaves a lot to be desired!! I have to stress that this is not definitely … Continue reading
Protected: Newcomer’s review of Conference 2011
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Posted in Aniridia Network news, Parents' accounts
Tagged Conference
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