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Description of activity
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.
Tel: 01427 718093
Address: 70 Hyde Vale London SE10 8HP
Nystagmus Awareness Day - 20 June
Organisation Contact Details
Address and Accessibility
Dietary needs catered for
Staff have specialist training
Please enter any further details about your accessibility / specialist support
We operate a virtual service and have no physical premises however we have website support and information service and telephone helpline available,
Days and times of activity / opening
|Monday||From 0900||To 1700||telephone helplone|
|Tuesday||From 0900||To 1700||ditto|
|Wednesday||From 0900||To 1700||ditto|
|Thursday||From 0900||To 1700||ditto|
|Friday||From 0900||To 1700||ditto|
When is the activity or service available
How to access the service/activity
Description of Eligibility or Referral Criteria and Pathways (if applicable)
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
Does a parent / carer need to stay on premises during activity
Is there a cost for this service or activity
Inclusion and Accessibility
Taking part if you are a child or young person with additional needs or a disability.
How can a child or young person with SEND take part in this activity
We provide support and assistance to children and young people, their carers and parents 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