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Author Archives: Aniridia Network
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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Befrienders who speak languages needed
The Aniridia Network UK Befriending Scheme has successfully created over thirty five buddy relationships in the last two years. We can only do this with the kindness of those of you who are willing to make contact with other families, who have … Continue reading
Drug company donates £1,000 to ANUK
A global biopharmaceutical company has provided a donation to ANUK for which we are extremely grateful. PTC Therapeutics is the company that discovered and is developing ataluren for the treatment of disorders due to a genetic nonsense mutation. Approximately 20% of patients … Continue reading
Posted in Aniridia Network news, Fundraising, Research
Tagged ataluren, donation, fundraising, ptc
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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
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