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Author Archives: Aniridia Network
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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Young people with aniridia needed for sleep research
Scientists want adolescents and young adults to take part in a study to learn more about how an aniridia-related gene affects sleep. Are you the kind of person they are recruiting? aged 10 to 20 years old with aniridia medically stable … Continue reading
Posted in National Institute for Health WAGR study, Research
Tagged melatonin, NIH, pineal gland, sleep
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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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Questions & answers on aniridia
Session at Aniridia Network UK Conference 2014 By: Panel of experts and individuals affected by aniridia A chance to ask that question that you always remember on the way home from your appointment or that there never seems to be … Continue reading
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
Living with aniridia – A generational perspective presentation
Session at Aniridia Network UK Conference 2014 By: Mary Cox Mary Cox, her father, and her two daughters were born with aniridia. 2014 was the centenary of her father’s birth. In the previous 100 years understanding and treatment of the … Continue reading
Emerging molecular therapies for aniridia presentation
Session at Aniridia Network UK Conference 2014 By: Professor Colin E. Willoughby The first part of this talk introduced the genetics of aniridia and in particular, the underlying molecular mechanisms, as this will form the basis to understand the developments in … Continue reading
Stem cell research and treatment for aniridia presentation
Session at Aniridia Network UK Conference 2014 Introducing Cells For Sight By: Dr Alex Shortt PhD FRCOphth The Cells for Sight Transplantation and Research Programme. is a group of scientists and clinicians who work together at Moorfields Eye Hospital and the … Continue reading
Mark and Harry: Our journey with aniridia presentation
Keynote session at Aniridia Network UK Conference 2014 There was no history of aniridia in the family, but when Harry arrived their journey with aniridia had begun. This session is a personal account of learning to deal with Harry’s aniridia … Continue reading
Posted in Parents' accounts, Patients' tales
Tagged Conference, Conference 2014, event
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