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Nystagmus Network

Overview

24/7 Website support and information. telephone helpline weekdays 9-5

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.

Contact

Website: www.nystagmusnetwork.org

Email: info@nystagmusnet.org

Tel: 01427 718093

Address: 6 Lancaster Gardens Kingston upon Thames KT2 5NL

Social media

Linkedin: Linkedin.com/nystagmusnetwork

Twitter: Twitter.com/NystagmusUK

Facebook: Facebook.com/NystagmusNetwork

Instagram: Instagram/NystagmusNetwork

Nystagmus Awareness Day - 20 June

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Times and availability

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

Age Range: All ages

Contact

We operate a virtual service/website support and telephone helpline. Service is free and self referral by telephone or email is accepted

Sue Ricketts
Executive Information and Development Manager

Address

Nystagmus Network
6 Lancaster Gardens
Kingston upon Thames
London
KT2 5NL
Get directions

Costs

Annual membership is available, however information and support is completely free of charge

Referral

Referral requiredNo

Self referral via e mail or telephone contact

Last updated: 30 March 2026