The Nystagmus Network is proud to have been nominated for a Visionary Eye Health Award 2026 for our project creating the family friendly guide, ‘How nystagmus is diagnosed’.
Turning clinical jargon into family empowerment
When the Royal College of Ophthalmologists published a new clinical care pathway for nystagmus in young children it was a cause for celebration. It introduced standardisation of care and reduced health inequalities. But it didn’t really translate for parents and families. We rewrote it for them.
Our parent-friendly guide to how nystagmus is diagnosed transforms complex information into clear, reassuring, never patronising, language, covering genetic testing, clinical procedures and where to turn to for support. It was shaped at every stage by parents and carers who know exactly what families need in that overwhelming moment of diagnosis.
The impact is real and measurable. Around 600 families a year receive a new nystagmus diagnosis for their child in the UK. They can all now access the same high-quality information, regardless of where they live or which clinic they attend. We’ve ended the postcode lottery in nystagmus diagnosis.
Health care professionals can also use the guide to inform their conversations with families, improving consistency of care at the point of diagnosis.
When clinical expertise meets community insight, families are no longer passive recipients of a diagnosis but are informed, empowered participants in their child’s care.
