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.

2019 Annual General Meeting

138, Digbeth, Birmingham, B5 6DR on 1 June 2019 at 10:40am Continue reading

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Annual Report 2018-19

Read details of what our officials did and our finances between last April 2018 this March in the Aniridia Network Annual Reports for 2018/19. In summary, thanks to great efforts by the team, Aniridia Network has a had a good … Continue reading

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Dave’s trustee nomination

Dave McKay has nominated himself to be a trustee of the Aniridia Network. There will be an election for him and any other nomintees at the Annual General Meeting on 1 June. Dave has been our Conference Officer for the … Continue reading

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Cornea Connect 2019

#CorneaConnect was a fantastic day discussing aniridia with medical researchers and patients at UCL Institute of Ophthalmology and Moorfields Eye Hospital. It aimed to bring aniridia patients together with scientists and clinicians in the Cells For Sight team, to learn about cornea research and … Continue reading

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£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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Graham’s story of life with aniridia and stem cell treatment

Graham has written a blog post about growing up in the UK with aniridia and losing sight due to glaucoma/cataracts. He also writes about the recent initial success at restoring some sight by transplanting stem cells that began in his … Continue reading

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Edward’s half marathon fundraiser

Edward ran 12 miles in the Vitality Big Half Marathon to raise money for the Aniridia Network. He was inspired to do so by his cousin’s daughter Sabrina, who has aniridia. He says: “Sabrina is an amazing girl with a … Continue reading

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Scarlett’s sponsored walk

Rachel’s 3-year-old daughter Scarlett has aniridia. Together they did a sponsored walk at Tiverton Canal Basins in Devon on 3 March, joined by family and friends. Despite the rain, the walk was a great success, and they raised a fantastic £1198 for … Continue reading

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Professors’ Bremond Gignac and Rama message for Rare Disease Day 2019

To mark Rare Disease Day on 28 February 2019, two of the top specialists in Europe, made a commitment to keep researching aniridia. Thanks to the French aniridia group Geniris for making this video, that we added subtitles to. Also … Continue reading

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