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Category Archives: Parents’ accounts
Review of Aniridia Network UK Conference 2013
By Sarah Conference 2013 was the first Aniridia Network UK (ANUK) conference that I had attended. I had quite an intense experience as I was there in both personal and official capacities – having aniridia and being part of the conference … Continue reading
Conference 2013 – a parent’s review: ‘Good Vibrations’
By Susan, the parent of a 4-year-old daughter with aniridia and WAGR/11p Deletion Syndrome. I am so glad I went to this year’s Aniridia Network UK (ANUK) annual conference. I had almost decided to give it a miss but it turned … Continue reading
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
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
Posted in Aniridia Network news, Parents' accounts, Patients' tales
Tagged meeting, meetup
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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
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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