Local nystagmus networks
If you can help the Nystagmus Network to set up and run a local group or face to face meet up, a chance for people living with nystagmus: adults, children and young people and their parents, to get together to share experiences and support, please contact us. Thank you.
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Virtual support networks
We run monthly virtual support groups for parents and for adults living with acquired or congenital nystagmus. Meet like-minded people, share experiences, make new friends. It’s a great way to connect with other members of the nystagmus community.
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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 team
The charity is run by a group of trustees, a small staff team and a growing band of volunteers. Most of us have lived experience of nystagmus, or support a family member who does.
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Education Support Service
Securing appropriate special education support for a child with nystagmus is not always straight forward. Nystagmus Network staff and our volunteer education advocate are here to help.
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Benefits advice
A diagnosis of nystagmus does not automatically mean you are entitled to benefits. We can help you with information and support with applications.
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