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Author Archives: Aniridia Network
Rare Disease Day 2020 Meetup
Rare Disease Day is always a very good opportunity to bring people together and raise further awareness of aniridia. To mark the occasion, trustee Eleanor Burke hosted an aniridia meetup at Wynn’s Hotel in Dublin on Saturday 29 February 2020, … Continue reading
Consultation on artificial iris implants guidance: have your say
Draft guidance about using artificial iris implants in England is open for consultation. This follows a review evidence on the efficacy and safety of artificial iris implants for people with aniridia. The recommendation is that, for the moment, surgery to … Continue reading
Funding for aniridia drug research in Aberdeen
The charity Fight for Sight is funding scientists at the University of Aberdeen to test two drugs for the treatment aniridia. The team will determine whether taking either of the drugs by mouth or as eye drops can restore levels … Continue reading
Channel swim fundraiser
A woman has raised £2,629 for people with aniridia and WAGR syndrome by completing a gruelling swim across the English Channel – at the second attempt. Nicola S Morgan took on the challenge to help buy a £1,800 electronic magnifier … Continue reading
Send Christmas cards by aniridics to fund treatments conference
Are you planning to post Christmas cards to your friends and family? We suggest you send our e-cards instead and tackle aniridia too! The cards even have lovely designs by children from around the world who have aniridia. Send us your design … Continue reading
Posted in Fundraising
Tagged Christmas, European Conference on Aniridia, fundraising, greeting cards
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Scotland & London Meet-Ups
This month we held 2 successful meet-ups in different parts of the UK, bringing together a variety of people affected by aniridia. In the north we were proud to hold our first ever event in Scotland, when trustee Eleanor Burke … Continue reading
100km Thames Path Run Fundraiser
On the weekend of 7-8 September, Kieron Price ran 100 kilometers along the Thames Path in an incredible 21.5 hours. He raised over £900 for aniridia research via Fight for Sight. He took on the challenge because his daughter … Continue reading
Summer Cycling Fundraiser
Teresa & Vaughan Kay, along with their friends Thomas Thorpe & Vicky Grimmer, have challenged themselves to a summer of fundraising, by taking part in 4 big cycling events. And half of all the money raised will go to the … Continue reading
Posted in Fundraising
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Family fundraising nets £100
Aniridia Network trustee James and his wife set up a stall in their front garden as part of a local jumbletrail. Residents sell bric-a-brac and homemade food while neighbours explore the streets to pick up bargains. They sold a lawnmower, … Continue reading
Research into aniridia symptoms link to genetics
Research has begun into whether the severity of aniridia can be linked to variations in genetics. The scientists need patients to take part. Dr Moosajee has been given money from the UCL Therapeutic Acceleration Award to document the medical history of … Continue reading
Posted in Research
Tagged genetics, Moorfields, Moosajee, PAX6, UCL Institute of Opthalmology
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