Category Archives: National Institute for Health WAGR study

Assist research by joining a patient registry

It’s now easier than ever to assist research into aniridia and similar conditions. A patient registry has been set up and we encourage any of you with (with children who have) the following conditions to add your/their details to it. … Continue reading

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Young people with aniridia needed for sleep research

Scientists want adolescents and young adults to take part in a study to learn more about how an aniridia-related gene affects sleep. Are you the kind of person they are recruiting? aged 10 to 20 years old with aniridia medically stable … 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

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A rare glimpse into the ordinary

The National Institutes Of Health have published an article and video about their study in to obesity and WAGR/11p deletion syndrome. It features Aniriida Network UK trustee James who took part as a ‘aniridia only’ patient. You can also read … Continue reading

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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

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Beth@NIH 11: Results

I have a small pineal gland which is usually the case with people who have aniridia. I have low vitamin D levels (probably because I live in England and I don’t go out in the sun much) I have some … Continue reading

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Beth@NIH 10: More blood and discharge

Mary got me up at 5.30am to wee but unfortunately I lack the ability to do this on command so they had to wait until 8am! lol! I had to rest in bed until 7.30 when Shannon came to put … Continue reading

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Beth@NIH 9: Blood, blood and more blood

I had to fast from 8pm and get up and go to the ward early with the last of my 24 hour urine collection. Phew! Nutrition came and tested my body fat and then needed some more information about my … Continue reading

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Beth@NIH 8: Testing, testing 3,2,1

I woke up bright and early and got a latte again. I had to lug over a huge bottle of urine for the end of my 1st 24 hour collection. I had to take it to the mall with me … Continue reading

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Beth@NIH 7: Occupational therapy and hearing

So Josiah took off all the glue from my head with something that reminded me of nail polish remover. My hair was soaked and horrible and all the stickers on my face had to come off too. While this was … Continue reading

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