Nystagmus Network

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25 Eden Way

Tel: 029 2045 4242 or 0845 634 2630

Web: www.nystagmusnet.org/cms/

Nystagmus is a form of visual impairment. It is an involuntary eye movement which cannot be corrected by wearing spectacles or contact lenses. Accompanying eye conditions such as short-sightedness, long-sightedness or astigmatism may be corrected, enabling the sufferer to see more clearly.

The Network is a self-help group run by people who are affected by nystagmus. The Network was founded in 1984 by Vivien Jones whose son, Sam, has nystagmus. Founder members had all experienced widespread ignorance about nystagmus and decided to set up a self-help group to provide support and information to all those affected. The Network aims to promote awareness and understanding, and to encourage medical research into the condition. The Network is involved in the following activities:

  • Publications include information packs for parents, adults and teachers. Also, a number of factsheets.
  • Focus is the newsletter keeping members updated regarding research, equipment, etc.
  • An information card for school teachers has been produced which suggests how they may assist pupils with nystagmus; also a pocket size ID card for pupils.
  • Annual open days are held.
  • The Network can provide speakers for seminars, teachers' workshops and other meetings.
  • They support research and have organised two international research workshops.
  • They have two books specifically for children with nystagmus: "Wobbly Eyes" and "Tales of Northwick".
  • Their website includes an interactive forum.

Last updated on 18/08/2015

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