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Nystagmus Network

We provide support and information, raise awareness and fund research.
Nystagmus Network
REGISTERED NAME
NYSTAGMUS NETWORK
REGISTERED NUMBER
1180450
ORGANISATION TYPE
Charity Commission England and Wales
YEAR OF REGISTRATION
2018
LOCATION
United Kingdom
Last Updated:
20.08.2026
£160k

Turnover

2

Employees

9

Volunteers

Organisation Overview

Areas of Interest

  • Disorders

Our History

  • The Nystagmus Network was founded in 1984 as a self help group by Vivien Jones MBE after her son was diagnosed with nystagmus when he was 3 months old. It has grown exponentially from these humble beginnings to the hi-tech digital online presence of today. Vivien remains at the helm as Honorary President and active member of the research committee.

Areas of Operation

  • United Kingdom

Beneficiaries

  • People with Disabilities

    Support and information for adults and children living with congenital or acquired nystagmus, their families and carers and the professionals working with them. Nystagmus is a serious lifelong form of vision impairment.

Our Vision for a better future

  • The Nystagmus Network promotes a better understanding of nystagmus and funds research to find effective treatments and, eventually, prevention and cure. Until that day, the charity offers the nystagmus community as much support and information as possible and ensures that, following diagnosis, there is somewhere for them to turn.

How the charity helps

  • Provides Services
  • Provides Advocacy/advice/information
  • Sponsors Or Undertakes Research

Our Social Value in Media

  • Title:
    Publication of Concise Practice Point for managing nystagmus in childhood

  • Media Name:
    Nystagmus Network

  • Media Date:
    2023/10/05

  • Description:
    Clinical guidance adopted by the Royal College April 2023.

  • Image:
    achievment-image

READ

  • Title:
    Providing secretariat services to the Nystagmus UK Eye research group (NUKE)

  • Media Name:
    Nystagmus Network

  • Media Date:
    2022/06/30

  • Description:
    Thank you for all your hard work and keeping us all focused. NUKE member

READ

Our goals to make a difference

  • Support the 2.4 in 1,000 people living with nystagmus in the UK.

  • Train eye care professionals to meet the needs of patients with nystagmus in High Street opticians.

  • Deliver an annual international nystagmus symposium to ensure collaboration and progress towards treatment.

  • Build regional nystagmus networks to bring targeted and timely support to adults and families.

  • Connect with teachers to ensure that children with nystagmus are supported in school.

Beneficiary Testimonials

With thanks to the Nystagmus Network for the sense you help to make of what having nystagmus means and how we and families like ours can support our children to lead amazing lives.

a parent beneficiary
n/a

Partner Testimonials

This is a recording of a webinar delivered on 28th May 2020. This webinar gives an overview of adapting routine optometric practice to satisfy the needs of patients with nystagmus.

CET Points website
https://cetpoints.com/cet/testing-dispensing-and-supporting-patients-with-nystagmus/overview

Contact Details

Website Link
Email whatimpact
Telephone whatimpact
Social
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