The front cover of the Nystagmus Network annual report 2021.

We publish our Annual Report 2021

With two years of global pandemic behind us, the Nystagmus Network is still here, supporting the nystagmus community, thanks to the dedication of our valued supporters, fundraisers and members.

Thanks to you, in 2021 we

·       supported almost 600 people with enquiries, helping them to make sense of nystagmus

·        engaged with and provided information to over 13,000 people on social media

·        invested a further £17,320 in nystagmus research

Read the Annual Report 2021 here

Seeing Beyond The Eyes

The Nystagmus Network is pleased to share this guest post from our friends at Visualise Training and Consultancy. The new guide ‘Seeing Beyond The Eyes’ includes details of the charity’s services and our contact details so that patients with nystagmus can find us easily for information and support.

Eye care and Health Professionals armed with information to improve lives of patients with sight loss

A free resource pack for eye care and health professionals containing valuable information on sight loss support services, charities, equipment and referral pathways has been produced by Visualise Training and Consultancy  with the support of Thomas Pocklington Trust.

The pack complements the ‘Seeing Beyond the Eyes’ CET workshops  currently touring the UK which raise awareness of the difficulties faced by patients diagnosed with irreversible sight loss. It contains valuable information on local sight loss charities, Eye Care Liaison Officers (ECLO),Vision Rehabilitation Workers, low vision assessment services and Habilitation Workers. It also lists national organisations supporting people with sight loss and condition specific charities. Daniel Williams of Visualise said “It is vital patients with sight loss are referred immediately to sight loss services that can enable their independence and help them deal with a difficult time in their life. However Optical professionals can’t refer if they don’t know who they are referring hence why we have created such a resource pack and training roadshow.At the age of 8, I was diagnosed with Retinitis Pigmentosa, a gradual loss of sight, and had consultations with Dispensing Opticians, Optometrists and Ophthalmologists and at no point was I referred to any support services which is why I am so passionate about empowering eye care professionals with the awareness of what is available for people with sight loss to live independent lives”

Links to professional resources are also included such as the Government’s Access to Work grant scheme, an A – Z list of eye conditions and Thomas Pocklington Trust’s guide to designing a home for someone with sight loss.

Charles Segal, Dispensing Optician from D and H Hantman Optometrists said “It was one of the best CET courses, I have attended. “I had no idea that there was such a range of services, it made me fully aware of where we can send people and not just refer to the eye hospital. It was a highly informative meeting where the attendees actually met people who are dealing with or have dealt with people with sight loss,it was the first time I have actually met someone who has Retinitis Pigmentosa. It was moving and inspiring to hear how people with low vision get-on with their lives. The course has given me the confidence to help people who enter my practice and give them advice. The details of suppliers of low vision aids and daily living solutions are also invaluable for people facing sight loss during their transition to a different way of life”.

The pack can be downloaded free of charge by clicking here

For more information on Visualise Training and Consultancy visit their website

Nystagmus Network launches new information and support line

Anyone needing information or support from the Nystagmus Network can now speak to someone on the phone throughout normal office hours. From Monday to Friday, Sue will answer the phone whenever she is available. If she happens to be away from her desk, or in the evenings and at weekends, you can leave a message. Then Sue, Rachel or Sara will call you back.

The number to call is 01427 718093

Alternatively, if time is short, you can continue to use the [email protected] email address for all enquiries, or request support and information through our contact form.

This new service is thanks to BT telecomms engineer, Jason, who braved the falling snow to install our new landline. Thank you, Jason!


Nystagmus Network launches new publication on nystagmus and driving

Whether or not people with nystagmus can drive is probably the most frequently asked question the charity receives. Because nystagmus is such a complex condition and affects everyone differently, there is no definitive answer. In our new publication, Nystagmus and Driving, we address all the issues, answer your questions and signpost to free and concessionary alternatives.