Awareness
Nystagmus Awareness Day – 20 June
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One of the most challenging things for people living with nystagmus is being disbelieved. Because it isn’t always visible, people are told to simply get glasses, try harder or stop exaggerating. Our campaign ‘I’m not making this up’ gives a voice to that frustration and turns it into a powerful call for understanding.
Please donate to our #ImNotMakingThisUp campaign here Thank you for your support.
Why do we need to raise awareness?
We’re the Nystagmus Network, supporting people living with nystagmus. And that’s our problem right there. So many people have never heard of nystagmus! We need to change that. If more people knew about it there’d be greater understanding and we could really get some robust medical interest in research. So, please help us raise awareness of nystagmus on 20 June and every day. Thank you.
I’m not making this up
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 let’s make sure that as many people as possible get to know more about nystagmus.
Share your nystagmus story
Share your #ImNotMakingThisUp story for Nystagmus Awareness Day.
For Nystagmus Awareness Day 2026 we’re asking you to tell us when someone thought you might be making something up about your nystagmus.
Did anyone tell you to get some new glasses, try a bit harder or ask whether you were getting any better?
Who are the Nystagmus Network?
We’re a group of people dedicated to the nystagmus cause. Most of us either have nystagmus ourselves or support a family member or close friend who does.
Direct, lived experience of nystagmus makes us determined to make a difference.
Nystagmus awareness for schools
Our nystagmus friendly learning pack for children in Key Stage 1 is now available for you to download in PDF or Word. Download your pack here.