Monthly Archives: April 2014

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

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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

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Posted in Parents' accounts, Patients' tales | 2 Comments

Protected: James’s jujitsu blue belt and self-defence for the visually impaired

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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

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Posted in Medical staff talking | Tagged , | 2 Comments

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

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Posted in ANUK news | Tagged , | 3 Comments

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

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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

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Posted in Other agencies, Research | Leave a comment

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

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Posted in ANUK news, Medical staff talking, Research | Tagged , , | Leave a comment