Category Archives: Other agencies

Provision of useful services.

Aniridia Europe board meeting and networking event

Posted on March 9, 2012 by

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 →

Posted in ANUK news, Other agencies, Research | Tagged , | Leave a comment

Prepare for Rare Disease Day: Wednesday 29 February 2012

Posted on February 25, 2012 by

Rare but strong together A rare medical condition affects less than 1 in 2000 people. Aniridia affects about 1 in 100,000 people. Even fewer have WAGR/11p deletion syndrome making it ultra-rare. But collectively people who have rare conditions are not … Continue reading →

Posted in Campaigns, Other agencies | Tagged , , | 1 Comment

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

Posted on November 24, 2011 by

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 , , , , | Leave a comment