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Category Archives: Aniridia Network news
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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Change to how you can help ANUK by shopping on Amazon
There is an easy ways to raise money for us simply by shopping on Amazon.co.uk. It costs you nothing. Before buying do ONE of the following: come to our website and use the Julbo sunglasses for infants link on the … Continue reading
Invitation to aniridia youth summer camp 2015 in Italy
Registration deadline 1 February 2015 Aged 15-25 and have aniridia? Parent or sibling of such a person? You are invited to a fabulous activity holiday in Italy with 80 others from around Europe. The camp will run 4-14 August 2015 and will … Continue reading
Posted in Aniridia Network news, Other agencies
Tagged Aniridia Europe, event, Youth In Action Summer Camp
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Marina wins £250 in our Christmas raffle
The first Aniridia Network UK nationwide raffle took place in November. Congratulations to Marina in London who scooped the prize of £250 worth of Love 2 Shop vouchers.. Marina is mum to young Cormac who has sporadic aniridia. Liz, our Fundraising … Continue reading
Aniridia and Nystagmus meetings in Leicester on 28 June 2014
4:30pm, Lounge Bar, Mercure Leicester The Grand Hotel, Granby Street, Leicester, LE1 6ES IMPORTANT TO RSVP: meetup@aniridia.org.uk Anyone affected by aniridia, including relatives are invited to join us in Leicester to find out more about each other and discuss aniridia … Continue reading
Posted in Aniridia Network news, Other agencies
Tagged meetup, nystagmus, nystagmus network, university of leicester
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Annual Report & Accounts 2013/14
We hope that you have been keeping up to date with what has been going on for Aniridia Network UK (ANUK) through the newsletters that we send out during the year. To summarise those and add insight into what happens … Continue reading
Posted in Aniridia Network news
Tagged AGM, Annual General Meeting, annual report, Conference, Conference 2014, meeting, trustees
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Cornea Connect brings researchers and patients together
Researchers into aniridic keratopathy held a event so they could meet people affected by the condition so they could learn about each other. Corneal opacification affects people with aniridia because of deficiencies in the eye’s limbal stem cells. The Cells … Continue reading
Posted in Aniridia Network news, Other agencies, Patients' tales, Research
Tagged Limbal stem cells
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Join our trustee team for 2014/15
Could you lead our charity to: ensure it runs properly and enjoys success? We need all the help we can get. Don’t take it for granted that others will do it all or even as well as you could. We’re seeking … Continue reading
