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.

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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Celebrating Difference book crowdfunder

A crowdfunding campaign is underway to publish a book featuring children with rare conditions, including two with WAGR 11p Deletion Syndrome. Give the book your support and get a copy. The proposed book is the result of a photography project … Continue reading

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Our soapy gift to volunteers

We’ve said thank you for the great efforts of our volunteers by giving them soap. We also sold some to members to raise money. There’s a nice little story behind this oddity. The liquid hand soap is made by visually … Continue reading

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Posted in ANUK news, Fundraising | Tagged , | 1 Comment

Aniridia Day 21 June 2019

On this year’s day for improving understanding of aniridia around the world, we want you to focus on possibilities: tell everyone what it is possible to do with a visual impairment come together to show there are similar people nearby … 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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Posted in ANUK news, Medical staff talking, Research | Tagged , , , , , , , , | 2 Comments

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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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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Posted in National Institute for Health WAGR study, Research | Tagged | Leave a comment