Parents networking.

Local nystagmus networks


As soon as circumstances allow, the Nystagmus Network will restart a number of face to face regional meet ups – a chance for everyone living with nystagmus: adults, children and young people and their parents, to get together to share experiences and support. Everyone welcome!

To join a group or volunteer to lead one in your area, please contact us.

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A QTVI chatting with Open Day delegates.

Virtual support networks


Please join one of our virtual support groups for parents or adults living with acquired or congenital nystagmus. Meet like-minded people, share experiences, make new friends and support each other.

Get together on zoom once a month and connect with each other by email whenever you like, until it’s safe to meet up in person again.

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A woman holds her child aloft. He is smiling at the camera.

Information and support line


For information or support and a sympathetic ear you can speak to Sue on the phone throughout normal office hours, Monday to Friday. If Sue happens to be away from her desk, or in the evenings and at weekends, you can leave a message. She will call you back.

Call  01427 718093

Parents networking.

Education Support Service


Securing appropriate special education support for a child with nystagmus is not always straight forward. Nystagmus Network staff and volunteers are here to help.

The Nystagmus Network makes available a one to one education advocacy service for more complex cases to Nystagmus Network members. For a referral to the service, please contact us.

Mike chats with delegates at Open Day.

Benefits advice


Mike Hughes is a professional benefits adviser and member of the Greater Manchester Welfare Rights Advisers Group (GMWRAG). He also has nystagmus himself. Mike has supported members of the nystagmus community for many years with benefits applications and appeals. He produces all Nystagmus Network information on nystagmus, DLA and PIP. You canĀ download the latest version here.

If you are a member of the Nystagmus Network and would like a referral to Mike, please contact us.