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Author Archives: Aniridia Network
Do anyone’s eyes with aniridia have difficulty looking side ways?
Dr Joan Han, a physician at the National Institutes of Health in Bethesda, Maryland, USA, who is researching aniridia and WAGR/11p deletion syndrome has a question for you: Do the eyes of anyone with aniridia not move fully to the side when … Continue reading
Dear David Cameron: What life is really like with aniridia and on benefits
Today government plans for the biggest shake-up of the welfare system for decades come in to force. Hundreds of thousands of households across the UK will be affected by the changes to benefits. An article in the Mirror last autumn featured … Continue reading
Answer the Impact of nystagmus questionnaire
83% of people with aniridia also have nystagmus (‘wobbly eyes’). It is a factor in how much vision these people have. Here is an opportunity to contribute to research in to nystagmus. Nystagmus affects quality of life in all sorts … Continue reading
Posted in Research
Tagged nystagmus, nystagmus network, research, university of leicester
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Personal recordings for Rare Disease Day
To celebrate Rare Disease Day we encouraged people to each answer 5 questions about their rare condition and how they feel about it: Which rare disease do you/your family member/friend have? How does it affect you and/or them? Have you met other … 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
Lois recognised for cricket skills
Lois, who has aniridia has been “recognised and commended for her cricketing, determination and courage” at a recent awards evening. She has benefited from Street Chance a charity initiative to get disadvantaged young people playing cricket and so “increase aspiration, promote mutual respect, … Continue reading
Volunteer to help organise our 2013 conference
We urgently need a keen, reliable volunteer to help us to organise our next conference. How about you? The Aniridia Network UK Conference 2013 will be in London. Sadly Heather, who did the job last year, unexpectedly has to return … Continue reading
London meet-up 2012
The next aniridia meet-up will be a social evening on Wednesday 7 November 2012 in London. It’s the same date and area as Sight Village London. Like last time it’s going to be a “really interesting night”. Everyone affected by aniridia, including relatives is invited to … Continue reading
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