A Dad and his son are playing with a toy fire engine.

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. Sue will call you back.

Call  01427 718093

Children pointing at a computer screen.

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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The Nystagmus Network on Facebook


Nystagmus Network staff members post news, stories, information, research opportunities and your successes on our Facebook page every single day of the year. Please follow us to keep up to date with everything nystagmus.

Click here to visit our Facebook page

We also have 5 Facebook groups. Why not join one or more of them?

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

A woman and child embrace.

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 the Parents’ Group here

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

Adults sit around a table and chat.

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 the adults’ group here

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

Sara and Charlie at the Nystagmus Network merchandise stall.

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.

Join the Friends’ group here

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

The eye logo of the Nystagmus Network and the words nystagmus aware.

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.

Join the Awareness Day group here

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

Nystagmus Network logo.

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.