Skip to main content

Nystagmus Network

The Nystagmus Network is a registered charity in England and Wales supporting people living with nystagmus. Nystagmus is a complex eye condition, characterised by involuntary movements of the eye. The eyes appear to wobble or flicker from side to side, up and down or round and round. Nystagmus causes impaired vision, affecting the ability to focus, speed and depth perception and facial recognition. At least 1 in 1,000 people are born with nystagmus and many more acquire the condition later in life. 

The charity was founded in 1984 by Vivien Jones after her son was diagnosed with nystagmus when he was three months old. It has grown exponentially from very humble beginnings to the hi-tech digital online presence of today. The Nystagmus Network provides support and information, promotes a better understanding of nystagmus through an annual Nystagmus Awareness Day on 20 June and throughout the year and funds research to find effective treatments. Through its support services, the Nystagmus Network ensures that, following diagnosis, there is somewhere for a family to turn to.

Who to contact

Contact Name
Sue Ricketts
Contact Position
Executive Information and Development Manager
Social Media
Website Address

Nystagmus Awareness Day - 20 June 2021

Where to go

Nystagmus Network
Hyde Vale
SE10 8HP

We operate a virtual service and have no physical premises however we have website support and information service and telephone helpline available, 



Other Details


Table of costs
Table of costs
AmountCost Type
Nil special offer see 'other info'
Membership is available however not a pre requirement to access free support and information


Referral required
Referral Details


We support all age groups free of charge. Self referral via telephone or email  24/7 support and advice on website  9-5 telephone support service


Last Updated 15/06/2021

Share your feedback on this page

Please provide feedback on our website. Try to include any constructive suggestions for improvements and we will do our best to incorporate them.