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Nystagmus network

Organisation/Service Details

Organisation Details

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.
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

Organisation Contact Details

Contact Details

Contact Name
Sue Ricketts
Telephone

Address and Accessibility

Address Details

Venue Name
Nystagmus Network
Address 1
70
Address 2
Hyde Vale
Town
London
County
London
Postcode
SE10 8HP

Accessibility

Accessible building
N/A
Accessible toilets
N/A
Parking facilities
N/A
Dietary needs catered for
N/A
Staff have specialist training
Yes
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,

Availability

Availability Details

Days and times of activity / opening
MondayFrom 0900To 1700telephone helplone
TuesdayFrom 0900To 1700ditto
WednesdayFrom 0900To 1700ditto
ThursdayFrom 0900To 1700ditto
FridayFrom 0900To 1700ditto
When is the activity or service available
All Year Round
How to access the service/activity
Drop-in / Turn-up
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
No
Is there a cost for this service or activity
No

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

Who to contact for more information about inclusion and accessibility

Name
Sue Ricketts
Email Address
Telephone No.

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From 0 To 100

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