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Nystagmus Network

Summary
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.


Description

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: 70 Hyde Vale London SE10 8HP

Social media

Linkedin: Linkedin.com/nystagmusnetwork 

Twitter: Twitter.com/NystagmusUK 

Facebook: Facebook.com/NystagmusNetwork 

Instagram: Instagram/NystagmusNetwork

Nystagmus Awareness Day - 20 June

Thanks

 

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Who to contact

Contact Name
Sue Ricketts
Contact Position
Executive Information and Development Manager
Telephone
01427 718093
E-mail
info@nystagmusnet.org
Website
Nystagmus Network

Where to go

Name
Nystagmus Network
Address
70
Hyde Vale
London
London
London
Postcode
SE10 8HP
Notes

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

 

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When is it on?

Time / Date Details
24/7 Website support and information. telephone helpline weekdays 9-5
Time of day
Afternoon
Morning
Days
Monday, Tuesday, Wednesday, Thursday, Friday
Session Information
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

Inclusion Information

Supports special needs and disabilities
Yes
Special needs and disabilities experience
Visual impairment
Able to accommodate other cultures/ethnicities
Yes

Other Details

Costs

Table of costs
Table of costs
AmountCost Type
Nil Per week
Details
Membership is available however not a pre requirement to access free support and information
Referral required
No
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

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Age Range
0 years to 100 years
Facilities
  • Visual aids

Local Offer

Description

We support parents and carers of children and young people with Nystagmus and hold on line sessions. Our website is available free of charge 24/7. We have regular on line sessions for parents and offer bespoke representation and advocacy in relation to educational health care plans

 

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Contact Name
Sue Ricketts
Contact Telephone
01427718093
Contact Email
info@nystagmusnet.org
Links
Nystagmus network

General Extended Local Offer Response

Eligibility criteria for your service and any priority groups 

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

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Do you operate a waiting list? 
No
Waiting list details 

Self referral/website facility

How do you communicate with your service users? 
Directly with parents/carers
Learning events

Last Updated
05/05/2022
Keywords
Sight loss, Nystagmus, Vision Impairment
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