Nystagmus information and support line


For information or support from the Nystagmus Network you can speak to someone on the phone throughout normal office hours. From Monday to Friday, Sue will answer the phone, whenever she is available. If she happens to be away from her desk, or in the evenings and at weekends, you can leave a message. Then Sue or Sara will call you back.

The number to call is 01427 718093

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Email the Nystagmus Network


You can email the Nystagmus Network using this address:

info@nystagmusnet.org

We will email you back within 5 working days.

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Find the Nystagmus Network on Facebook


Click here to visit our Facebook page

Read all the latest nystagmus news research, education, events. You can also send us a message any time, day or night. We promise we’ll get back to you as soon as we can. We also run 3 Facebook groups for parents, adults and friends and Nystagmus Awareness Day.

Join our Facebook Group for Parents

The Nystagmus Network Facebook Group for parents and carers of children and young people with nystagmus. Share your experiences of diagnosis, early years and education support. Charity staff members Sue and Sara are the group admins, here to offer support, information, advice and guidance and point you in the right direction.

Join our Facebook Group for Adults

This Nystagmus Network Facebook Group is for adults living with acquired or congenital nystagmus. Share your experience of employment, sports and leisure, getting around and general day to day living. Charity staff members Sue and Sara are the group admins, here to offer support, information, advice and guidance and point you in the right direction.

Join our Acquired Nystagmus and Oscillopsia Facebook Group

This Nystagmus Network Facebook Group is the place for you to connect with other people living with acquired nystagmus and oscillopsia, find out more about these conditions and help drive research into diagnosis and therapies.

Join our Facebook Group for Friends of the Nystagmus Network

This Nystagmus Network Facebook Group is for our fundraisers, members and supporters. This is the place where we celebrate your achievements on behalf of the charity and say a huge THANK YOU! Charity staff members Sue and Sara are the group admins, here to support you with your fundraising, let you know about fantastic participation opportunities and to show you our unerring admiration and gratitude.

Nystagmus Awareness Day on Facebook

This Nystagmus Network Facebook Group is for everyone who wants to help us raise awareness of nystagmus so that everyone can enjoy a better quality of life. Charity staff members Sue and Sara are the group admins, here to let you know about awareness raising opportunities, help you raise awareness yourself and keep you up to date with all nystagmus news.

Please remember – if a Facebook group isn’t linked to our page, it isn’t our group.

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Our privacy policy


We won’t keep your contact details after we’ve answered your enquiry unless you ask us to.

You can read our full privacy statement here.