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Category Archives: Medical staff talking
Conference 2023 review
We held our first in-person conference for 4 years on 2 September 2023 at the Library of Birmingham. It was good to be back together after the pandemic – well, if you were able to get there! Many were: despite … Continue reading
The diverse functions of PAX6: How Veronica grew our understanding
Our Patron Veronica van Heyningen worked at the Medical Research Council for more than 35 years. In that time she and her colleagues in Edinburgh did pinoneering work to undertand the PAX6 gene. They were identified it as the gene … Continue reading
Conference 2022
Our main event of the year took place online today. People from all arond the UK, Ireland and beyond joined via Zoom to hear and talk about various aspects of aniridia. There reactions were heartening: I’m very grateful for all … Continue reading
5th European Aniridia Conference
We at Aniridia Network organised the latest edition of the European Aniridia Conference. It is a biennial event that brings together researchers, practitioners and diagnosis carriers, as well as industry representatives. They share the latest scientific know-how, experiences and ideas … Continue reading
Posted in International, Medical staff talking, Research
Tagged Aniridia Europe, Conference, European Aniridia Conference, event, meeting
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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
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Draft guidance about using artificial iris implants in England is open for consultation.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
£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
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
Report on long-term results of artificial iris implants
A review of 34 patients with congential, traumatic iatrogenic aniridia who had surgery to implant artificial irises has found: No repositioning of prostheses was necessary. In cases of keratopathy (17.6 %) visual function increased from baseline mean. The remaining iris … Continue reading
Screening embryos for aniridia available in UK
It is now possible to avoid passing on aniridia to children using a procedure called pre-implantation genetic diagnosis (PGD) How did PGD become available for aniridia in the UK? The Human Fertilisation & Embryology Authority (HFEA) maintains a list of … Continue reading
Posted in Medical staff talking, Other agencies
Tagged Genetic Alliance UK, genetics, HEFA, PGD
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