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Category Archives: Patients’ tales
Claire in the Chronicle
To promote the North East England aniridia meet-up in February that I organised, I got myself interviewed by the local newspaper. Here is a scan of the article. Click on the image to view it full size and then zoom … Continue reading
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
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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Going to a work place party 2
After the success of last years’ staff social, the senior management team at my workplace decided they would hold another event this year. It was planned to be held in the same place, in a local hotel. Tickets were free … Continue reading
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
Protected: Jenny’s career – Part 3: First interview
There is no excerpt because this is a protected post.
Paralympians with aniridia
The most decorated paralympian ever has aniridia. She and at least two athletes who have aniridia were at the London 2012 Paralympics. There might also have been a runner and a physiotherapist with aniridia too. Most decorated Trischa Zorn from … Continue reading
James @ National Institutes of Health
Introduction Earlier this year I travelled to the USA to take part in medical research related to aniridia. It and the accompanying holiday was a very special experience. Background National Institutes of Health The National Institutes of Health in the … Continue reading
Combating overhaning branches
I’ve got an idea in my head to do something about plants that obstruct the pavement. I’m fed up with ducking, flinching or actually getting scratched by the branches or leaves of things growing in people’s front gardens. That’s my … Continue reading
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