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Category Archives: Other agencies
Jenny and other blind people are let down by bus companies
ITV West Country News interviewed our member with aniridia – Jenny – who says she frequently misses her stop because there are no automated stop announcements on buses. The charity Guide Dogs for the Blind is calling for audible announcements … 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
Posted in Other agencies, Research
Tagged Aniridia Europe, Conference, European Aniridia Conference
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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
Posted in Other agencies, Research
Tagged Aniridia Europe, Conference, European Aniridia Conference
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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
Posted in Other agencies, Research
Tagged Aniridia Europe, Conference, European Aniridia Conference
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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
Posted in Other agencies, Research
Tagged Aniridia Europe, Conference, European Aniridia Conference
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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
Posted in Aniridia Network news, Other agencies, Research
Tagged Aniridia Europe, meeting
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Prepare for Rare Disease Day: Wednesday 29 February 2012
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, Fundraising, Other agencies
Tagged fundraising, rare disease, rare disease day
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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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Seminar about unlicensed treatments such as melatonin
Following our recent posts about melatonin we have news of a upcoming event about unlicensed and off-label treatments – which melatonin is, Patients Involved in NICE (PIN) in collaboration with RNIB, will be holding a seminar looking at the impact using unlicensed treatment has … Continue reading
Posted in Medical staff talking, Other agencies
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Protected: Mobility session report from Conference 2011
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Posted in Education professionals sharing, Other agencies
Tagged Conference, mobility
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