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.

Gene.Vision website about aniridia launched

Medical information about aniridia, written for both patients and doctors is now available on a new website by Moorfields Eye Hospital. Gene.Vision contains in-depth, but easy to read, details about aniridia for patients and their families. For example there is … Continue reading

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Aniridia Network Online Conference 2020

This year’s Aniridia Day was more important than ever. The absence of our usual conference, due to pandemic restrictions, made it vital to find another way of connecting aniridia patients with one another, and with those who support them. We … Continue reading

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2020 Annual General Meeting

Held online on 21 June 2020 Continue reading

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Annual Report 2019-2020

Read details of what our officials, members and supporters did and our finances between 1 April 2019 and 31 March 2020. Thanks to great efforts by everyone who helped with these achievements Continue reading

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Join our trustee team in 2020/21

Could you lead our charity to: ensure it runs properly and enjoys success? We need all the help we can get. Don’t assume others will do it all or even as well as you could. We’re seeking new people to … Continue reading

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Get a call to ‘Ask the expert’ about aniridia

Six members got to speak with an expert who cares for lots of patients with aniridia and has a detailed knowledge of the field A doctor who specialises in aniridia very generously offerred one-to-one calls with those affected by the … Continue reading

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Insecurity and aniridia

Two things taught Fern about insecurity – being blind due to aniridia and online dating. Watch her amazing TEDx talk. From denying her disability entirely to learning that she didn’t have to fully accept being blind to reveal it to … Continue reading

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Sleep and visual impairment health study

Participants are wanted for a study into the association between vision impairment and sleep, health, and wellbeing. The researchers are keen to identify the effects of different conditions including aniridia. Many people with aniridia experience sleep issues which may be … Continue reading

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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

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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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