Support

The Nystagmus Network is here for you

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.

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.

“What a brilliant idea the forum is and I really enjoyed it – a wide range of people with unique stories – obviously a lot of thought went into it and I can’t wait till the next one. “
– a new member of our adults’ forum

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

The Nystagmus Network trsutees and staff hold Nystagmus Network banners and smile at the camera.

The Nystagmus Network team

The Nystagmus Network is managed and run by a group of volunteer trustees, a tiny staff team and a growing band of volunteers, without whom none of our work would be possible.

Head shots of Frances Lilley and Claire Brinn.

Education Advocacy Service

SEND Law can be complex. For this reason the Nystagmus Network offers a one to one education advocacy service to Nystagmus Network members. Two volunteer education advocates, Frances Lilley and Claire Brinn, who are both IPSEA trained, are available to discuss your child’s individual education support needs in settings in England. They can provide legally-based advice to secure meaningful support across all stages of education.

For a referral to the service, please contact us.

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 can download the latest version here.

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