The Nystagmus Network works tirelessly to raise awareness of nystagmus, not only on Nystagmus Awareness Day but throughout the year. Why raise awareness? We firmly believe that the more people who know about nystagmus and understand its effects, the better life will be for the adults and children affected by the condition. New for 2019 We’ve revised … Continue reading Raising nystagmus awareness in 2019
The next meeting of our new North West regional group will take place on Saturday 26 January in Manchester. Nystagmus Network trustee, Marie Turnbull will once again be your host and this time she will be joined by our volunteer Education Advocate, Frances Lilley. We look forward to welcoming back the families and adults who … Continue reading Manchester nystagmus network
If you’ve ever wondered how a person with nystagmus sees or how the condition affects their sight, listen to Richard, Harriet and Will explain in our video. You can show our video to anyone or use it, completely free of charge, for training purposes. All we ask is that you let us know. Nystagmus, the … Continue reading Nystagmus, the way we see it
Whether you’ve had nystagmus all your life or have acquired it more recently, the Nystagmus Network is here to support adults with the condition, with information, research updates, news, meetings, membership and more. Or why not get involved with one of our fundraising activities?
The Nystagmus Network is pleased to be able to bring you so many real life nystagmus stories, thanks to the thoughtfulness and generosity of members of the nystagmus community. Today we bring you Mélissa’s story.
Mélissa was a healthy young woman, living and working in Canada until suddenly she acquired nystagmus and everything changed. Melissa is now adjusting to her new life with nystagmus and wanted to share her story of hope for the future … My beautiful, wobbly world My name is Mélissa Khalifé, I’m 30 years old and … Continue reading Guest post: Mélissa’s story of acquired nystagmus
Information on nystagmus, DLA and PIP is available free of charge directly from our website to anyone who needs it. Download here. Individual support from our volunteer benefits adviser is available to members of the charity.
Members of the Nystagmus Network are entitled to free education advocacy support and information whenever and for as long as they need it. This service is provided free of charge to subscribed members of the charity by our IPSEA trained volunteer education advocate, Frances Lilley. In 2019 we will double our capacity to support families … Continue reading Our education advocacy service
Our information and support line is available 24/7. You can help us keep it open with a donation this Christmas. Thank you. Find out more about Nystagmus is … this Christmas.
Merton Vision, London will be holding a patient information day tomorrow, Friday 23 November, from 12 noon to 4pm. Please come along to find out more about nystagmus and albinism. The Nystagmus Network’s Sue will be there to answer all your nystagmus related questions.