Nystagmus Network

20/06/2026

This we want to get people talking about nystagmus and listening to real stories and experiences. But what is nystagmus?

Nystagmus is an incurable eye condition that causes constant involuntary eye movements. There are two main types of nystagmus. Congenital nystagmus is usually noticed in the first few weeks of life and is a lifelong condition. Acquired nystagmus can occur at any time of life, often as the result of another condition, accident or illness.

Whether you’ve been diagnosed yourself or you’re supporting a friend or a family member, you can get in touch with us. We can answer your questions, provide tailored support and connect you with other people who are experiencing similar things.

This Nystagmus Awareness Day, share this post and get talking about nystagmus!

20/06/2026

It's Nystagmus Awareness Day 2026! This year, we've been raising awareness about the complexities of life with nystagmus by asking people to share their stories.

Nystagmus can be really difficult to explain to people. Often, one of the hardest things to deal with is that, because they don’t understand it, they don’t always believe what you say. How many times has someone told you to put your glasses on, try harder or stop complaining?

This Nystagmus Awareness Day, help us raise awareness and understanding of nystagmus by sharing your stories and talking to others about nystagmus. You could even starting your own fundraiser to support our mission! Our 'See through our eyes' fundraiser starts today and you can become a fundraiser for the campaign here: https://buff.ly/Bj3kb3p

18/06/2026

The Nystagmus Network is proud to host the International Nystagmus Symposium 2026. Co-chaired once again this year by Frank Proudlock Associate Professor, Ophthalmology, Department of Neuroscience, Psychology and Behaviour, University of Leicester and Mervyn Thomas, Clinical Associate Professor (Ophthalmology), Honorary Consultant Ophthalmologist, Clinical Lead Ulverscroft Eye Unit University of Leicester, the International Nystagmus Symposium 2026 will feature presentations from leading thinkers, respected practitioners and innovators from around the world.

Please note that this event is for researchers and clinicians - this is NOT a patient event. We look forward to sharing updates with you after the event; we will always share information about the latest nystagmus research with the nystagmus community.

Read more about the Symposium here:

Early bird* registration is now open for the International Nystagmus Symposium online on Friday 6 November 2026. Pre-register for your FREE place here *Early bird registration offers full access to Symposium 2025 recordings. Leading nystagmus researchers from across the globe will gather for the Int...

17/06/2026

Nystagmus Awareness Day 2026 is this Saturday! Our story this week is from Fairouz.

Some people have told Fairouz that she is 'doing it on purpose', that she is not trying hard enough to control her nystagmus, as if greater willpower could stop it. Despite this obstacles, Fairouz is an avid musician and loves playing her guitar to express herself. You can read more about her experiences here: https://buff.ly/H47YEqk

Please share your story with us at [email protected] and help us raise awareness this Saturday!

15/06/2026

Monday Focus - stories

This Saturday, 20 June, is Nystagmus Awareness Day! To raise awareness this year, we’ve been sharing real stories from our communities where people haven’t had their experiences of nystagmus listened to.

Nystagmus is an often misunderstood and also largely invisible condition, where people are often not believed when they try to explain its impact.

You can read all of our stories on our website: https://buff.ly/yHJWNyM

Please help us in raising awareness about nystagmus this week by sharing your stories and listening to other people’s experiences living with nystagmus.

’mNotMakingThisUp Whether you’ve been told to clean your glasses, try a bit harder or stop putting it on, we want to hear your stories about the things about nystagmus you’re definitely not making up

13/06/2026

Thinking of everyone living with albinism on Albinism Awareness Day today, especially our friends at Albinism Fellowship UK. Raise lots of awareness, guys!
The 2026 theme draws attention to how colour-based discrimination can affect dignity, safety and mental wellbeing.
Find out more here:

People with albinism face multiple forms of discrimination worldwide. International Albinism Awareness Day seeks to dispel the erroneous beliefs and myths influenced by superstition, which foster their marginalization and social exclusion.

12/06/2026

Thank you Billie!

Billie ran a junior mile for us last weekend. She raised over £300, which will help support people living with nystagmus and help fund research.

Join in with our fundraising campaign "See through our ours", raise £200 by the 5th July and we'll send you some Nystagmus Network Merch!

https://buff.ly/EKcg3X5

11/06/2026

We are excited to announce the release of our new guide for parents and carers! 'How nystagmus is diagnosed - a guide for parents and carers' covers all the tests a small child may undergo, explaining what they are for and includes information on support services available for families.

The new resource translates this expert clinical guidance into practical, easy-to-understand information for parents and carers, empowering them with knowledge and support right from the start.

This project follows on from the 2023 publication of the “Concise Practice Point for managing nystagmus in childhood” by the Royal College of Ophthalmologists, to which we proudly contributed as the patient representative member of NUKE (the Nystagmus UK Eye research group).

You can download the new guide for free on our shop here: https://buff.ly/4hBA91u
After you've read the guide, we'd really appreciate if you could take 5 minutes to share your feedback with us: https://buff.ly/ryU8KYX

Thank you to Jeans for Genes for funding this project and supporting our mission to champion the nystagmus community and ensure every family feels supported and understood.

10/06/2026

As we get closer to Nystagmus Awareness Day on 20 June, our story this week comes from Flynn and his mum.

People often tell Flynn that he looks fine and don't understand that, sometimes, his nystagmus means that life is a bit more difficult. Flynn's mum wrote a poem to explore his experiences - you can read it here: https://buff.ly/sFY0eh2

Please share your story with us at [email protected]

09/06/2026

For almost 100 years, British Wireless for the Blind Fund (BWBF) has provided free audio equipment to people living with sight loss to help improve independence, wellbeing and connection with the world around them.

Alongside their support for older people. they are increasingly working with children and young people who may benefit from accessible technology and audio devices. Equipment may include accessible audio players, smart speakers such as Alexa devices, USB audiobook players, radios and other specialist devices depending on individual need.

You can found out more info about BWBF on their website: https://blind.org.uk/
You can also email [email protected] for further info.

This Spring Paul is sharing his own story about how BWBF changed his life – and how you could unlock that magic for someone else.