Although nystagmus is not really a rare condition with around 2.4 in 1,000 people living with it in the UK, you can go a whole lifetime and never meet anyone else who has it. That's a great shame. It means that people are not only dealing with impaired vision, but they also experience social isolation and the feeling that they are the only one.
That's why the Nystagmus Network finds ways to bring people living with nystagmus together for peer support, to share their experiences, hints and tips and for confirmation that they need not be alone.
Throughout the year we run monthly online get togethers. Hosting an in person event is more of a challenge because of the cost. The £1,000 donation from the Benefact Group through the Movement for Good means that we can deliver two in-person events in 2026. We will bring together adults, children and their families living with nystagmus to hear from leading nystagmus researchers and clinicians, to learn from local support services and from the charity howe to live well with nystagmus and, crucially, to meet other people living with nystagmus just like them.
