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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.

Contact

Website: www.nystagmusnetwork.org 

Email: info@nystagmusnet.org 

Tel: 01427 718093

Address: 6 Lancaster Gardens, Kingston upon Thames, London KT2 5EL

Social media

Linkedin: Linkedin.com/nystagmusnetwork 

Twitter: Twitter.com/NystagmusUK 

Facebook: Facebook.com/NystagmusNetwork 

Instagram: Instagram/NystagmusNetwork

Nystagmus Awareness Day - 20 June

  

Who to contact

Contact Name
Sue Ricketts
Contact Position
Executive Information and development manager
Telephone
E-mail
info@nystagmusnet.org
Website
Website address

Where to go

Name
Nystagmus Network
Address
6 Lancaster Gardens
Kingston upon Thames
London
Postcode
KT2 5EL
Notes

We operate a virtual service on line and on telephone support. website access for information is available 24/7

Time / Date Details

When is it on
Office hours daily. 24/7 website support
Session Information
Monthly zoom meetings and telephone access 9/5 weekdays 24/7 support via website

Other Details

Costs

Details
No charge for our services however membership is available but not a requirement for free support and information

Availability

Referral required
No
Referral Details

Self referral via email/telephone

Other notes

We provide support and assistance to children and young people with Nystagmus. in addition, we offer an advocacy service and free 24/7 support on our website. telephone helpline and e mail facility is also available free of charge

 

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