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
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
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“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
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 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
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
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