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Author Archives: Aniridia Network
Annual Report & Accounts 2013/14
We hope that you have been keeping up to date with what has been going on for Aniridia Network UK (ANUK) through the newsletters that we send out during the year. To summarise those and add insight into what happens … Continue reading
Posted in Aniridia Network news
Tagged AGM, Annual General Meeting, annual report, Conference, Conference 2014, meeting, trustees
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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
Posted in Aniridia Network news, Other agencies, Patients' tales, Research
Tagged Limbal stem cells
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Doing karate while visually impaired
By Elliott, 14 For a lot of my life martial arts been on the list of things I wanted to do. It all started when my mum was walking me and my sister home from school, when leaflets about karate … Continue reading
It’s tough to be different -The Adventures of Zip and Mike
Being born with aniridia, I’ve spend most of my life discovering that people often know who I am long before I ever meet them. Word would spread quickly around the schools I attended and the places I went, and I … Continue reading
Posted in Patients' tales
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50 years with aniridia
To discover that your child has been diagnosed with Aniridia is upsetting and stressful. In 1964 it was devastating. Diagnosis: blindness, prognosis, no hope. I have read my recently deceased mothers diaries and her hopelessness, despair and unfounded guilt are … Continue reading
Posted in Parents' accounts, Patients' tales
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“Artificial iris implant surgery is not a very difficult procedure and is becoming more popular”
“Cataract surgery in eyes with iris defects can be challenging, but careful preparation as well as recent advances in surgical instruments and iris implants mean outcomes are significantly improving for these patients.” This was the subject of a presentation given … Continue reading
Join our trustee team for 2014/15
Could you lead our charity to: ensure it runs properly and enjoys success? We need all the help we can get. Don’t take it for granted that others will do it all or even as well as you could. We’re seeking … Continue reading
Notice of 2014 Annual General Meeting
Notice is hereby given that the Annual General Meeting of Aniridia Network UK will be held at: Armada House, Telephone Avenue, Bristol, BS1 4BQ at 15.30pm on 7 June 2014 to transact the following business. Agenda Minutes of the previous … Continue reading
Posted in Aniridia Network news
Tagged AGM, Annual General Meeting, Conference, meeting, trustees
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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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Our Patron’s Life Scientific on Radio 4
Aniridia Network UK’s Patron, Veronica Van Heyningen, was the subject of the BBC Radio 4 programme Life Scientific today. The half hour interview explored her love of research, particularly on the aniridia and the PAX6 gene plus her contribution to … Continue reading
Posted in Aniridia Network news, Medical staff talking, Research
Tagged media, Patron, Veronica
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