Roger stands in his garden.

Nystagmus is … a guide for adults

A fabulous new publication, Nystagmus is … a guide for adults, is now available FREE from our online shop. The booklet is inspired by the wonderful Roger (pictured), who first contacted us with the idea last Nystagmus Awareness Day. He began with the words: “I have enjoyed nystagmus for nearly 80 years” and went on to outline his suggestion of asking people who live with nystagmus to describe it for others.

The end result of that project is full of contributions from people who have nystagmus, describing how they feel about it and how it affects their lives. For the first time you can read what it’s like to have nystagmus by the people who really know.

When we shared an advance copy of Nystagmus is … with Roger, earlier this week, he said:

“It’s fabulous and should open up a whole new understanding of vision disability awareness and training. I am proud to have been part of it and proud that you took up the challenge of getting and sharing your members’ feedback.”

Download your copy of Nystagmus is … here

Nystagmus Patient Information Day

The Nystagmus Network is delighted to be supporting a Nystagmus Patient Information Day, running at Moorfields, London on Saturday 24 November.

Moorfields Eye Hospital is holding an information day for adults with nystagmus since childhood. The day will allow you the opportunity to directly influence the patient pathway from diagnosis to treatment and the support services available.

The structure of the day will involve:

  • An overview of nystagmus and current management
  • A patient journey
  • Interactive discussion focusing on the needs of the patient
  • Talks from Visual Impairment and Low Visual Aids teams

Sue, from the Nystagmus Network, will be at the event.

Lunch and coffee will be provided, and places (free of charge) will be allocated on a first come, first served basis.

Tickets close: midnight Friday 9 November

For enquires please contact Maria Theodorou at: [email protected].

This day is funded by Friends of Moorfields with support from Nystagmus Network.

We will not be discussing children services at this meeting. Some of the content and discussions had may not be suitable for children. We are unable to offer childcare facilities on the day.

To book your place, please click here.

The event is hosted by NIHR Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology.