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Author Archives: Aniridia Network
Peter and Lyn include Aniridia Network UK in their wills
By Peter and Lyn Having recently retired, our thoughts turned to updating our wills. We have always been extremely grateful for the support and advice we received from others when our son James was diagnosed with aniridia back in 1979. Back … Continue reading
Posted in Fundraising, Parents' accounts
Tagged fundraising, legacy, regular donation, will
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Invitation to the Oslo Aniridia Conference
Aniridi Norge (the Norwegian aniridia association) has organised the first European scientific conference about aniridia as well as an international gathering for the aniridia community. You are invited between 8 and 10 June 2012. James and Katie from Aniridia Network … Continue reading
Posted in Medical staff talking, Parents' accounts, Patients' tales, Research
Tagged Aniridi Norge, Conference, meeting, Oslo
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Natasha and Violet: fundraising and media stars
Natasha, mum to Violet with aniridia responded to our calls for fundraising and media volunteers. She’s been holding raffles and selling goods via Facebook in her home town of Halifax, West Yorkshire. The current drive is for Easter eggs … Continue reading
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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Dr Agarwal describes using a glued iris prosthesis
Ophthalmic surgeons have described various techniques to fix iris deficiencies. For the most part, these improve the patient’s visual quality. In this column, Dr Agarwal describes a surgical technique of using a glued iris prosthesis, namely a PMMA aniridia intraocular … Continue reading
Aniridia Network UK online in 2011
In 2011 This site was viewed about 5,700 times. If it were a train, it would take about 5 trips to carry that many people. There were 35 new articles, growing the total to 51. Our Facebook page: grew to … Continue reading
London meet up: A personal review
By Keith The London meet up was surreal. Of the 14 people who turned up, so many of them were so like me. In one evening, I learnt so much about a condition I’ve had since birth. For the first … Continue reading
London meet-up review: A big success
A fantastic 14 people with aniridia, plus relatives came to the meet-up in London in early November. There was great chat about all aspects of life and new friendships created. The evening started at 6pm at Belans bar on High … Continue reading
Manchester for annual meeting 2012
Manchester, Saturday 19 May 2012 – put it on your calendar right now. That’s where and when the next big Aniridia Network UK meeting will be. It is your chance to hear from and ask questions in person to: people who … Continue reading
Charity strategy update
Plans for the next two years were the result of the trustee’s latest strategy day. We decided the charity’s priorities for 2011-12 were: increasing the number of volunteers boosting funds raised from donors strengthening how we administer the organisation. Katie, … Continue reading
Posted in Aniridia Network news, Fundraising
Tagged charity, fundraising, meeting, membership, strategy, trustees, volunteering
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