Tag Archives: WAGR

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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Posted in National Institute for Health WAGR study, Research | Tagged , | Leave a comment

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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Posted in Medical staff talking, National Institute for Health WAGR study | Tagged , , | 2 Comments

Fact check on Daily Mail piece about teenager with WAGR/11p deletion syndrome

A recent Daily Mail article aroused our interest. The piece features Gemma who has WAGR, also known as 11p deletion syndrome after its genetic cause. It includes aniridia among its possible symptoms. We were glad to see a national newspaper … Continue reading

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Posted in Medical staff talking, Other agencies | Tagged , , , , | Leave a comment