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Tag Archives: WAGR
WAGR Weekend 2025
Several of our members affected by WAGR enjoyed meeting in Sussex recently Parents Aaron and Michelle brilliantly organised the 2 day event with International WAGR Syndrome Association (IWSA). Aniridia Network trustee James went along to speak with people and fly our flag. Nearly everyone with WAGR has aniridia. Continue reading
Posted in Medical staff talking, Other agencies, Research
Tagged event, IWSA, Mariya Moosajee, Ngozi Oluonye, WAGR
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Down Syndrome Act could negatively affect support for WAGR
An alert from Genetic Alliance UK warned us about the potential impact of new legislation called the Down Syndrome Act. It raised the prospect of people with Down syndrome being treated better than others with similar learning difficulties, caused by … Continue reading
Channel swim fundraiser
A woman has raised £2,629 for people with aniridia and WAGR syndrome by completing a gruelling swim across the English Channel – at the second attempt. Nicola S Morgan took on the challenge to help buy a £1,800 electronic magnifier … Continue reading
WAGR & Pain Perception Research
The following is a transcription of a news release by IWSA (International WAGR Syndrome Association). Research In WAGR Syndrome Patients Shows Importance of BDNF Gene In Pain Perception Research published in the February 2019 issue of the journal, PAIN, has important … Continue reading
Al’s sight loss and depression journey
Hi, I’m Al, I’m 28 and I’m from South Wales. I have been registered as severely sight impaired (blind) since birth due to aniridia and nystagmus, caused by a rare missing gene that resulted in a condition called WAGR … Continue reading
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
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
Posted in Medical staff talking, National Institute for Health WAGR study
Tagged NIH, obesity, WAGR
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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
Posted in Medical staff talking, Other agencies
Tagged cancer, IWSA, pancreatitis, press, WAGR
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