Category Archives: Research

£200,000 aniridia drug research, based and funded in the UK underway

Research into the growth of eyes with aniridia has begun, funded by Aniridia Network and two families in the UK. In 2018, for the first time, Aniridia Network excitedly partnered with Fight for Sight to offer a £15,000 grant for … Continue reading

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WAGR & Pain Perception Research

The following is a transcription of a news release by IWSA (International WAGR Syndrome Association). Research In WAGR Syndrome Patients Shows Importance of BDNF Gene In Pain Perception Research published in the February 2019 issue of the journal, PAIN, has important … Continue reading

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Cornea Connect 2019

The UCL Institute of Ophthalmology in London is inviting patients with aniridia to meet scientists, learn about research and discuss their experiences at Cornea Connect 2019, taking place on Monday 20th May. The day will begin with talks from researchers and … Continue reading

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Five go to Paris for European Conference on Aniridia 2018

Five members of Aniridia Network travelled to Paris for a conference about the science and treatment of aniridia. They met the world’s top experts on aniridia and learned about their latest research and techniques. They also took part in a … Continue reading

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PAX6 and the Cornea: An Eye to the Future

One of the speakers at this year’s conference was Thanos Papadimitropoulos from University of Liverpool. He told us about his team’s research, funded by Fight for Sight, into a potential new therapy that may one day be able to slow down or … Continue reading

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Our first grant for UK research into aniridia

We are thrilled to announce a grant for research into aniridia! Aniridia Network UK has partnered with charity Fight For Sight to each contribute half the money to a £15,000 grant. The money is only available to UK academic or medical institutions. Get more … Continue reading

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Skin in the game – participation in aniridia research

Sarah tells how her skin sample is helping research into aniridia, and yours can too. Having a rare eye condition can seem like a disadvantage a lot of the time, but there are times when you get an exciting opportunity to … Continue reading

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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

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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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Beth’s experience of research into development of sighted babies of visually impaired parents

Beth, who has aniridia, and her sighted son Edward are taking part in research into his development. Researchers want to know how having a visually impaired care giver affects babies. Beth says she can “highly recommend taking part” so we recorded … Continue reading

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Posted in Parents' accounts, Patients' tales, Research | Tagged | 2 Comments