Category Archives: Other agencies

Provision of useful services.

Meet-up in Newcastle

From 5pm 9 May 2015 Rendezvous Bar, County Hotel, Neville Street, Newcastle-Upon-Type, NE1 5DF Everyone affected by aniridia: patients, relatives, doctors, teachers etc was invited to join us in to find out more about each other and discuss aniridia related topics. … Continue reading

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Invitation to aniridia youth summer camp 2015 in Italy

Registration deadline 1 February 2015 Aged 15-25 and have aniridia? Parent or sibling of such a person? You are invited to a fabulous activity holiday in Italy with 80 others from around Europe. The camp will run 4-14 August 2015 and will … Continue reading

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Lois leads England Women Blind Cricket Team

Lois who has aniridia is captain of the England Women’s Blind Cricket Team. They are currently on tour in Nepal. Before they left, she and others were interviewed by BBC Radio 4 In Touch The Nepalese cricket team inspired the Cricket … Continue reading

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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

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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

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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@aniriida.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

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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

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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

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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

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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

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