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Category Archives: Research
Recruitment for the Optimum VI project: Early development and support of babies and young children with a visual impairment
This important national study is being led by Great Ormond Street Hospital Developmental Vision team (Dr. Naomi Dale and Dr. Alison Salt). This is the first national study to investigate early development and support in babies and young children with … Continue reading
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Do anyone’s eyes with aniridia have difficulty looking side ways?
Dr Joan Han, a physician at the National Institutes of Health in Bethesda, Maryland, USA, who is researching aniridia and WAGR/11p deletion syndrome has a question for you: Do the eyes of anyone with aniridia not move fully to the side when … Continue reading
Answer the Impact of nystagmus questionnaire
83% of people with aniridia also have nystagmus (‘wobbly eyes’). It is a factor in how much vision these people have. Here is an opportunity to contribute to research in to nystagmus. Nystagmus affects quality of life in all sorts … Continue reading
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Tagged nystagmus, nystagmus network, research, university of leicester
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James @ National Institutes of Health
Introduction Earlier this year I travelled to the USA to take part in medical research related to aniridia. It and the accompanying holiday was a very special experience. Background National Institutes of Health The National Institutes of Health in the … Continue reading
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
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
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
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
Aniridia Europe board meeting and networking event
After the establishment of Aniridia Europe its board members met in Paris on 19 and 20 November 2011. It was a chance to meet face to face and also for new members from Germany and Bulgaria to meet us all for the first … Continue reading
Invitation to the Oslo Aniridia Conference
Aniridi Norge (the Norwegian aniridia association) has organised the first European scientific conference about aniridia as well as an international gathering for the aniridia community. You are invited between 8 and 10 June 2012. James and Katie from Aniridia Network … Continue reading
Posted in Medical staff talking, Parents' accounts, Patients' tales, Research
Tagged Aniridi Norge, conference, meeting, Oslo
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