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Category Archives: Patients’ tales
Thanks to the person in front
Dear random pedestrian, You never knew it but you really helped a disabled person today. You came to be walking in front of me, in a environment that I found tricky to navigate alone with my visual impairment. Thank you! … Continue reading
Glen’s story of aniridia and nystagmus
Glen has made marvellous videos about how his visual impairment due to aniridia and nystagmus affects him. He’s also produced a written versions entitled ‘Life With Aniridia‘ and ‘Life With Nystagmus‘. These are just two of many fantastic posts about disability on Glen’s … Continue reading
Laura’s story of austism and aniridia
I’m Laura, I’m 26 and was born with aniridia. My eyes get very sore, especially during the summer; I wear dark glasses and these help with the sensitivity. I take two types of eye-drops daily to keep my eye pressures … Continue reading
Call for Aniridia Network Ireland
By Eleanor from Ireland Three weeks ago I went to the Aniridia Network UK Meeting 2016 in London, it was my first time and I thoroughly enjoyed meeting people with the same eye condition as myself. I had never before … Continue reading
Posted in Aniridia Network news, Patients' tales
Tagged Conference, event, Republic of IIreland, volunteering
3 Comments
Gleb’s Living with aniridia video
By Gleb Transcript Hi guys. My name is Gleb and today I’m going to talk about aniridia and my life basically So I have aniridia. For those who don’t know, what aniridia is. it is the inherited sporadic eye … Continue reading
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 Network 