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Category Archives: Other agencies
Teenager with aniridia coaches other disabled children
Lois, 16 who has aniridia has been made a lead sports coach by The Change Foundation. She is teaching others to play cricket The Change Foundation believes in changing lives through sport and are running a project that gives disabled … Continue reading
Tracy with aniridia talks of her job as an Eye Clinic Liaison Officer
Here’s a recording of an interview with one of our members who has aniridia. She has recently started work as an ECLO, providing information, advice and practical or emotional support on living with sight loss. The interview is by VI … Continue reading
Posted in Other agencies, Patients' tales
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Aniridia and Nystagmus meetings in Leicester on 28 June 2014
4:30pm, Lounge Bar, Mercure Leicester The Grand Hotel, Granby Street, Leicester, LE1 6ES IMPORTANT TO RSVP: meetup@aniridia.org.uk Anyone affected by aniridia, including relatives are invited to join us in Leicester to find out more about each other and discuss aniridia … Continue reading
Posted in Aniridia Network news, Other agencies
Tagged meetup, nystagmus, nystagmus network, university of leicester
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Sighted guiding and general mobility presentation
Session at Aniridia Network UK Conference 2014 By: Rick Allbrook Rick Allbrook from Guide Dogs for the Blind Association (GDBA) discussed their role as a mobility charity and how they support people with sight loss to get out and about independently. … Continue reading
Cornea Connect brings researchers and patients together
Researchers into aniridic keratopathy held a event so they could meet people affected by the condition so they could learn about each other. Corneal opacification affects people with aniridia because of deficiencies in the eye’s limbal stem cells. The Cells … Continue reading
Posted in Aniridia Network news, Other agencies, Patients' tales, Research
Tagged Limbal stem cells
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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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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
Meet-up in Bristol on 5 October 2013
4:30pm, Terrace Bar/Coffee Shop, Bristol City Centre Marriot Hotel, 2 Lower Castle Street, Old Market, Bristol, BS1 3AD RSVP: meetup@aniridia.org.uk Anyone affected by aniridia, including relatives are invited to join us in Bristol to find out more about each other … Continue reading
Posted in Aniridia Network news, Other agencies, Parents' accounts, Patients' tales
Tagged meetup, nystagmus, nystagmus network
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