Our two aims are quite simple -- support people with nystagmus and promote research. Here are some of the ways we do this:

• Awareness – We all get fed up explaining what nystagmus is, but thanks to the Nystagmus Network (NN) that doesn’t happen as much as it used to. And we help you answer questions like why glasses don’t fix nystagmus or why you might turn your head to look straight ahead.

• Benefits – We can advise and advocate if you apply for benefits like DLA (Disability Living Allowance).

• Community – Our membership scheme creates a sense of community and makes it easier for us to lobby government and others for change.

• Cooperation – We work with other organisations to raise awareness and help them meet the needs of people with nystagmus.

• Driving (or not driving) – It really isn’t that bad. We advise on how to live a successful life if you can’t drive a car because of nystagmus.

• Education – We work with specialist teachers and others so that people with nystagmus get the best out of education with the least possible fuss.

• Employment – We advise on application forms, interviews and in the last resort will support you in an employment tribunal – if things get that bad.

• Fundraising – We’ve channelled tens of thousands of pounds into research and it’s already making a difference in terms of diagnosis and our understanding of nystagmus. So, whether you want to raise £10 in a coffee morning or £10,000 by running a marathon we provide the support you need.

• Helpline – We offer telephone support and the chance to talk to others with nystagmus or to the parents of children with nystagmus. There’s absolutely no need to feel isolated or sit there re-inventing the wheel.

• Information – Choose from our selection of books, children’s stories, leaflets, teachers’ and parents’ guides, or our simple A4 card reminding teachers of the main effects of nystagmus.

• Meeting and sharing – We organise events where you can talk to others. This is really helpful for parents of children with nystagmus and for adults who have never knowingly met anyone else with the condition.

• Newsletter – We publish a quarterly 16 page newsletter with research news plus personal experiences of nystagmus. Available in print and on audio CD.

• Research – We fund and encourage research and publicise opportunities to take part in research.

• Training – We supply speakers to talk about nystagmus and its effects for people working in education, health and social services. We also organise talks for parents and people who have nystagmus.

• Website forum – You’re here already, so we don’t need to say anymore, other than try the forum and join us so that together we can achieve more and stop people needlessly suffering because their eyes won’t stay still.

Why we do what we do

We’ll let others answer that question:

“I think the Nystagmus Network does a fantastic job and I'm very grateful to all those who give their time and energy towards it. It helped me when my daughter was diagnosed with nystagmus when she was about 3+ (she is 18 now) but I wish I'd known more about the condition from when she was born to when she was diagnosed.”

“We have just found out that our 9 month old son has nystagmus - something we had never heard of until this week. We feel shattered and scared and it has been quite a comfort to find out much more information on this website.”

“I'm really pleased to be running for your cause. It was a great source of information to me when my son was diagnosed, and continues to be so. I'm very grateful to the NHS for their support, but I really wasn't given much information on Nystagmus when he was first diagnosed. In fact I wasn't told for a good while that his glasses didn't even correct it, and had to source a lot of info from your website!”

“The literature you publish has been such a lifeline for us. It's so easy to read and has been such a help for our son.”

“I would also like to thank you for just BEING. Here in the Czech Republic it is almost impossible to find any information and your web sites and documents have helped me so much to get over that tough time when my only baby daugter was diagnosed with nystagmus. Thank you.”