30 years of nystagmus research – what a difference it has made


When my daughter was 6 weeks old a paediatrician at baby clinic told me she was blind. Just like that. No preamble. It was a devastating experience, a cruel message, bluntly delivered. I went to see my GP, whom I knew well and trusted. She confirmed what I already suspected. My daughter wasn’t blind, but … Continue reading 30 years of nystagmus research – what a difference it has made

Nystagmus Network research investment 2020 – 2021


An update of our post doctoral award For those of you eagerly awaiting news, alongside charity trustees, of the outcome of 2019/2020 applications for the new post doctoral research project into nystagmus, jointly funded by the Nystagmus Network and Fight for Sight, we can now share with you the somewhat disappointing news that the project … Continue reading Nystagmus Network research investment 2020 – 2021

Research on nystagmus and glaucoma


As previously reported here, the Research Unit for Nystagmus at Cardiff University has been looking for people with nystagmus to take part in a survey that aimed to further their understanding of the number of people with nystagmus who have also been diagnosed with glaucoma. Nikita Thomas, of Cardiff’s School of Optometry and Vision Sciences … Continue reading Research on nystagmus and glaucoma

Volunteers needed


It’s thought that some types of nystagmus are caused by a genetic spelling mistake. Although nystagmus is not classified officially as a rare disease, we can all take part in genetic research to help researchers find out more. The NIHR BioResource – Rare Diseases has been established to identify genetic causes of rare diseases, improve … Continue reading Volunteers needed

Nystagmus researchers need your help


Common misconceptions about nystagmus A team of nystagmus researchers in the UK have recently shown that there is significant variation in the way people with nystagmus are supported and given information, from diagnosis to treatments and beyond. They are now interested in studying public perceptions of nystagmus and are developing a similar questionnaire for both … Continue reading Nystagmus researchers need your help

Join us at the Manchester meet up


The next meeting of our north west regional Nystagmus Network support group is on Saturday, 25 April from 1 to 3pm in central Manchester Adults with nystagmus, parents of children with nystagmus and anyone supporting someone with nystagmus are all welcome to come along. The meeting is hosted by Nystagmus Network trustee, Marie Turnbull (pictured). … Continue reading Join us at the Manchester meet up

A survey on glaucoma and nystagmus


You can support the University of Cardiff team to develop new diagnostic testing for people with nystagmus by taking their survey today. “The Research Unit for Nystagmus at Cardiff University is looking for people with nystagmus to take part in a survey that aims to further our understanding on the number of people with nystagmus … Continue reading A survey on glaucoma and nystagmus

UK Nystagmus Research Workshop


The Nystagmus Network is today hosting the UK Nystagmus Research Workshop 2019 at the School of Optometry and Vision Sciences, Cardiff University. Delegates are joining us from the 6 UK centres of nystagmus research excellence. These are: The School of Optometry and Vision Sciences, Cardiff University The Ulverscroft Eye Unit, University of Leicester Moorfields Eye … Continue reading UK Nystagmus Research Workshop

A survey on glaucoma and nystagmus


You can support the University of Cardiff team to develop new diagnostic testing for people with nystagmus by taking their survey today. “The Research Unit for Nystagmus at Cardiff University is looking for people with nystagmus to take part in a survey that aims to further our understanding on the number of people with nystagmus … Continue reading A survey on glaucoma and nystagmus

In celebration of Irene


Today Nystagmus Network’s Sue and Sara are travelling to Leicester University to attend a day of celebrations. We shall be marking 20 years of ophthalmology in Leicester and, in particular, the work of Professor Irene Gottlob. The programme for the day, at the Ulverscroft Eye Unit, includes a range of presentations on various eye conditions, … Continue reading In celebration of Irene