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Category Archives: Patients’ tales
Skin in the game – participation in aniridia research
Sarah tells how her skin sample is helping research into aniridia, and yours can too. Having a rare eye condition can seem like a disadvantage a lot of the time, but there are times when you get an exciting opportunity to … Continue reading
Hannah’s rare story
Today is the rarest of days , so what better day to raise awareness of rare conditions and the people that live with them every day. I am 1:47,000 which makes this 1:1401 day (365×4+1) sound common. What makes me … Continue reading
Francesca’s student life
This article by Francesca is about finding her feet in her first year at uni and a few pointers for anyone who’s heading there in the next few weeks, from her perspective. Francesca has aniridia and writes in Brighter Futures … Continue reading
Attending your first conference – it will be more positive than you think
By Heather B I attended an ANUK Conference for the first time in 2014. My daughter was diagnosed with aniridia at 5 weeks old, she is now 3 years old so I had managed to avoid the conference for 2 years. I knew … Continue reading
Take a (No) #IrisSelfie to raise awareness and funds for aniridia
We want to raise awareness of aniridia, help those who are visually impaired because of it, and support treatment research. So we want you to post a photo of your eye, WITH or WITHOUT an iris on Twitter / Facebook / … Continue reading
Posted in Campaigns, Fundraising, Patients' tales
Tagged fundraising, IrisSelfie, rare disease, rare disease day
2 Comments
Aniridia doesn’t stop Jessica doing all kinds of sports
ByJessica I am 21 living in London, have partial aniridia and have never let it stop me from any kind of sport. know some people get worried about sporting with an eye condition like this and am fully aware that … Continue reading
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
Beth’s experience of research into development of sighted babies of visually impaired parents
Beth, who has aniridia, and her sighted son Edward are taking part in research into his development. Researchers want to know how having a visually impaired care giver affects babies. Beth says she can “highly recommend taking part” so we recorded … Continue reading
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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