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Author Archives: Aniridia Network
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
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
2020 Annual General Meeting
Held online on 21 June 2020 Continue reading
Posted in ANUK news
Tagged AGM, Annual General Meeting, annual report, charity, meeting, registration
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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
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
Posted in ANUK news
Tagged AGM, Annual General Meeting, meeting, trustees, volunteering
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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
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
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
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
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
