The European Aniridia Conference


Aniridia UK will host the European Aniridia Conference online from 31 July to 1 August 2021 The event will combine excellence in aniridia research and clinical practice, plus patient engagement. Highlights include: Talks by: Tony Moore, Cheryl Gregory Evans, Dominique Brémond-Gignac, Christina Grupcheva, Russell Foster, David Price, Daniel Aberdam, Neil Lagali, Ali Djalilian, Julie Daniels, … Continue reading The European Aniridia Conference

Thank you, Tim


Children’s author, Tim Pearce who modestly describes himself as ‘the favourite children’s author you’ve never heard of’ joined the Nystagmus Network earlier this week to lead a fun and inspiring story writing workshop for children. Tim began by sharing his journey to publishing his first book ‘Secret Agent Striker’ and then gave us a sneaky … Continue reading Thank you, Tim

Children’s writing workshops this summer


Did you miss the children’s online writing workshop with fabulous children’s author, Helen Rutter? What a shame. That means you didn’t get to hear all about Helen’s inspiration behind her book ‘The Boy Who Made Everyone Laugh’ and you didn’t get to meet her dog, Billy Whizz! Never mind. There are two more workshops still … Continue reading Children’s writing workshops this summer

Sue’s at VIEW


The annual VIEW conference for QTVIs (Qualified Teachers of Visually Impaired children and young people) is taking place last week and this – virtually. The Nystagmus Network attends every year. In fact this was the last event Sue attended in 2020 before lockdown. Sue’s virtual presentation on nystagmus in the classroom is exciting lots of … Continue reading Sue’s at VIEW

Notes from the February Parents’ Forum


Thank you to everyone who joined us for the Nystagmus Network February Parents’ Forum. Homeschooling Although it was Half Term for some, homeschooling was mentioned quite a bit. We talked about requesting modified print versions of online work to reduce the amount of screen time children are exposed to during this time. We loved the … Continue reading Notes from the February Parents’ Forum

Notes from the January forum for adults living with CN


It was so wonderful to see and hear people exchanging experiences and tips on Tuesday evening, 26 January (morning for those who joined us from New Zealand!).  Here are just a few notes from our discussions. Jigsaws online There are lots of websites offering jigsaws to do onscreen. I tried TheJigsawPuzzles.com.You can change the background … Continue reading Notes from the January forum for adults living with CN

Notes from the January AN/Oscillopsia Forum


With people joining us from both sides of the Atlantic, there was some very interesting discussion at the most recent Nystagmus Network forum for adults with Acquired Nystagmus and Oscillopsia. Symptoms It is always reassuring, particularly for new members of the group, to hear the wide range of symptoms others are experiencing. These range far … Continue reading Notes from the January AN/Oscillopsia Forum

Notes from the January Parent Forum


The Nystagmus Network runs regular virtual get togethers for parents and carers on Zoom. Here’s Sue’s report on the January event, which focused on homeschooling. It was lovely to see Mums and Dads on the Nystagmus Network Parents’ Forum this month. You’re all doing a great job on the homeschooling front, but I think it’s … Continue reading Notes from the January Parent Forum

Nystagmus Networking


With a most difficult year now thankfully behind us, the Nystagmus Network is here to support the nystagmus community in any way we can. Keeping you connected Virtual meet ups for people living with nystagmus, or supporting someone who does, resume this month. For parents There will be a virtual parents’ forum at 8pm on Tuesday 12 January. … Continue reading Nystagmus Networking

Nystagmus Network hosts UK research workshop


On Friday 2 October, the Nystagmus Network once again hosted the annual UK nystagmus research workshop. This is an opportunity for researchers, clinicians and academics to get together to share their work and plan greater collaboration. They are, after all, all working towards the same goal. The workshop took place via zoom. Nystagmus Network trustees … Continue reading Nystagmus Network hosts UK research workshop