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Category Archives: Aniridia Network news
London meet up 2015
We’re had an informal get together in Kensington on today. Ten people came along to for coffee and chat about aniridia. This included people of all ages who have it and parents of those who do. It was held as a … Continue reading
Review of Newcastle Conference 2015
By Sarah, part of the Conference committee Preparing and planning Organising for a conference is a bit like making a large purchase. You do your research, ask people who can help and enlist the help of a friend or two, Once you … Continue reading
Help with conference costs
The cost of travelling to and attending our events is a big issue for some people. A family in Wales who receive support from their local integrated team for disabled children (social services) found a solution. They asked their social worker … Continue reading
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
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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Milton Keynes meet-up
We met on met to discuss aniridia and celebrate Rare Disease Day 2015 at Whetherspoons at XScape, Milton Keynes. We had a great evening talking about dealing with school, doctor and even being a stuntman while having aniridia. If you want to meet more … Continue reading
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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