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Author Archives: Aniridia Network
Charter for improvements in rare disease drug evaluation launched
77 patient groups, including Aniridia Network UK are calling for improvements in rare disease drug evaluation in a ground breaking new report. This is the first time so many patient groups have come together to set out a united case for change. Today Genetic … Continue reading
Posted in Other agencies, Research
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Our Patron’s Life Scientific on Radio 4
Aniridia Network UK’s Patron, Veronica Van Heyningen, was the subject of the BBC Radio 4 programme Life Scientific today. The half hour interview explored her love of research, particularly on the aniridia and the PAX6 gene plus her contribution to … Continue reading
Posted in Aniridia Network news, Medical staff talking, Research
Tagged media, Patron, Veronica
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Sunglasses and eyeshields
Alternatives to traditional sunglasses that could be well suited to people with aniridia are available from RNIB. The HiView range of eyeshields and the green coloured HiView Plus in particular are designed to cut down glare while increasing contrast. They offer … Continue reading
TV programme looking for people with aniridia
Optomen Television, the BAFTA award-winning producers of Mary Portas: Queen of Shops, Kevin McCloud’s Man Made Home and Heston Blumenthal’s Feast is producing a brand new TV medical series for the Discovery Network and needs your help. The programme … Continue reading
Youth With Aniridia In Europe summer camp 2015
A summer camp in north east Italy for young people with aniridia across Europe is being organised. You can be involved with this exciting event The camp will be in summer 2015 in a national park in the Venetia region … Continue reading
System to measure treatment of Limbal stem cell deficency)
Scientists have established a system to measure the effectiveness of treatment for cornea disease in people with aniridia – caused by Limbal stem cell deficiency (LSCD) This objective, standardised method allows the effect of a treatment on patients to be … Continue reading
Protected: Day in the life of an aniridia research scientist
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Posted in Medical staff talking, Research
Tagged keratoplasty, Limbal stem cells
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Aniridic Family group on Facebook
To get answers to questions on aniridia and meet people affected by it, a great resource is the Aniridic Family group on Facebook. It has over 500 members from all over the world and is still growing. Anyone can start … Continue reading
Ben gets job with Dolphin
Ben who has aniridia has got a job with Dolphin Computer Access a company providing assistive technology including the popular SuperNova screen reading software. He will be a Technical Support Apprentice. Ben says “This is a whole new challenge. I’ll be … Continue reading
Walk through London at night raises £742 for aniridia research
I’m a reasonably happy walker. Five miles or so can be very pleasant on a nice day. Also, I know people who’ve done the Moonwalk for breast cancer, who I didn’t think were necessarily much fitter than I was, at least with the … Continue reading
Posted in Aniridia Network news, Fundraising, Research
Tagged Fight For Sight, fundraising
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