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Author Archives: Aniridia Network
ANUK is dead! Long live ANUK!
We want to dissolve Aniridia Network UK and replace it with something better. Your vote in favour is vital. It may be a surprise to hear that Aniridia Network UK is not as much of a charity as it could … Continue reading
Attending your first conference – it will be more positive than you think
By Heather B I attended an ANUK Conference for the first time in 2014. My daughter was diagnosed with aniridia at 5 weeks old, she is now 3 years old so I had managed to avoid the conference for 2 years. I knew … Continue reading
Screening embryos for aniridia available in UK
It is now possible to avoid passing on aniridia to children using a procedure called pre-implantation genetic diagnosis (PGD) How did PGD become available for aniridia in the UK? The Human Fertilisation & Embryology Authority (HFEA) maintains a list of … Continue reading
Posted in Medical staff talking, Other agencies
Tagged Genetic Alliance UK, genetics, HEFA, PGD
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Notice of 2015 Annual General Meeting
Update: Minutes of ANUK AGM 2015 Notice is hereby given that the Annual General Meeting of Aniridia Network UK will be held at: Thistle Hotel, Neville Street, Newcastle upon Tyne NE1 5DF on 26 September 2015 to transact the following business. Agenda … Continue reading
Posted in Aniridia Network news
Tagged AGM, Annual General Meeting, Conference, meeting, trustees
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Meet-up in Newcastle
From 5pm 9 May 2015 Rendezvous Bar, County Hotel, Neville Street, Newcastle-Upon-Type, NE1 5DF Everyone affected by aniridia: patients, relatives, doctors, teachers etc was invited to join us in to find out more about each other and discuss aniridia related topics. … Continue reading
Annual report 2014/15
We are pleased to say that between April 2014 and March 2015 Aniridia Network UK had a successful and varied year. We have been able to reach out to new members and participate in several exciting events. However we badly need … Continue reading
Posted in Aniridia Network news
Tagged AGM, Annual General Meeting, annual report, meeting
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A child with a rare condition brings additional challenges and opportunities
By Heather B Being the parent of a child with a rare condition brings with it an additional layer of challenges and opportunities. Both my children were born with medical conditions but only one is rare. Natasha was born with … Continue reading
Researchers sell cakes to raise £115 in aid of ANUK
Researchers at University College London raised £115 for Aniridia Network UK by making and selling cakes. They had a cake stall in the common room of the UCL Institute of Ophthalmology which is attached to Moorfields Eye Hospital. Organiser Victoria is studying cornea … Continue reading
Heather’s voyage of discovering support for herself and Zoe
Heather is mum to bright and bubbly four-year-old Zoe who attends the Royal London Society for the Blind Nursery. Zoe has aniridia and is registered ‘Severely Sight Impaired.’ Heather does not allow Zoe’s sight condition to define her; instead she … Continue reading
Take a (No) #IrisSelfie to raise awareness and funds for aniridia
We want to raise awareness of aniridia, help those who are visually impaired because of it, and support treatment research. So we want you to post a photo of your eye, WITH or WITHOUT an iris on Twitter / Facebook / … Continue reading
Posted in Campaigns, Fundraising, Patients' tales
Tagged fundraising, IrisSelfie, rare disease, rare disease day
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