Category Archives: Other agencies

Provision of useful services.

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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Sunglasses and eyeshields

Alternatives to traditional sunglasses that could be well suited to people with aniridia are available from RNIB. The HiView range of eyeshields and the green coloured HiView Plus in particular are designed to cut down glare while increasing contrast. They offer … Continue reading

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TV programme looking for people with aniridia

Optomen Television, the BAFTA award-winning producers of Mary Portas: Queen of Shops, Kevin McCloud’s Man Made Home and Heston Blumenthal’s Feast is producing a brand new TV medical series for the Discovery Network and needs your help.   The programme … Continue reading

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Youth With Aniridia In Europe summer camp 2015

A summer camp in north east Italy for young people with aniridia across Europe is being organised. You can be involved with this exciting event The camp will be in summer 2015 in a national park in the Venetia region … Continue reading

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Meet-up in Bristol on 5 October 2013

4:30pm, Terrace Bar/Coffee Shop, Bristol City Centre Marriot Hotel, 2 Lower Castle Street, Old Market, Bristol, BS1 3AD RSVP: meetup@aniridia.org.uk Anyone affected by aniridia, including relatives are invited to join us in Bristol to find out more about each other … Continue reading

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Jenny and other blind people are let down by bus companies

ITV West Country News interviewed our member with aniridia – Jenny – who says she frequently misses her stop because there are no automated stop announcements on buses. The charity Guide Dogs for the Blind is calling for audible announcements … Continue reading

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1st European Conference on Aniridia: Day 3

Day 1 and day 2 had been the scientific conference. Today was for a wider audience: those affected by aniridia.  There were a series of short presentations, alternating between Norwegian and English. The English ones were slightly simplified, shortened versions … Continue reading

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1st European Conference on Aniridia: Day 2

Saturday was full of presentations from various doctors and researchers. Professor van Heyningen gave two talks about the genetic aspects of aniridia. This included looking at the full range of the effects of PAX6 mutation, plus aniridia without PAX6 mutations … Continue reading

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1st European Conference on Aniridia: Day 1

The hotel’s breakfast buffet was certainly broad but not quite enough to include staple English breakfast elements such as bacon and hash browns or fried bread. It was sautéed potatoes and mini sausages instead. After breakfast I took a walk … Continue reading

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1st European Conference on Aniridia: Arrival

I like visiting other cities and I decided it was time to get a more international angle and more medical knowledge on aniridia. So I’ve come to the 1st European Aniridia Conference in Oslo. This evening I left work and … Continue reading

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