The Nystagmus Network supports the parents/carers of the 1 in 1,000 babies born with the eye condition nystagmus as well as children, young people and adults who have nystagmus. We provide support, information and signposting to services, raise awareness of the condition to ensure better access to services and improved quality of life. We also foster and fund research into better diagnostics and potential treatments and, eventually cure.
Without support many people with nystagmus would not reach their potential at school, would struggle to find employment, live independent lives or make a valuable contribution to their communities.
We run an information and support line. We provide free to download documents on all aspects of living with nystagmus via our website. We post information daily on our Facebook page and run 3 Facebook groups. We run regional and virtual peer to peer support groups. We host and promote an annual national Nystagmus Awareness Day on 20 June. We hold an annual Open Day. We host an annual UK research conference.
We raise funding through donations, supporter led fundraising and membership subscriptions to fund our work and, where possible, research.
