Author Archives: Aniridia Network

About Aniridia Network

A charity support group for people with the genetic visual impairment aniridia and their families in the UK and Ireland. Our vision is that people with/associated with aniridia are hopeful, confident, supported and well informed regarding aniridia. Founded in 2000. First registered as a charity in 2011 and fully in 2018.

Rare Disease Day 2020 Meetup

Rare Disease Day is fast approaching once again, on 29th February 2020. This is always a very good opportunity to bring people together and raise further awareness of aniridia. There are various ways to get involved. To mark the occasion, … Continue reading

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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Draft guidance about using artificial iris implants in England is open for consultation.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

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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

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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

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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

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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

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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

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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

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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

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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

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