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Promoting research, education and continuous support to end undiagnosed and misdiagnosed
Ring20
epilepsy

Ring Chromosome 20 Syndrome

Ring Chromosome 20 Syndrome or r(20) syndrome, is an ultra-rare disease the main symptoms being difficult to treat epilepsy, cognitive decline and behaviour disorder.

Your Stories

Diana Wagner

Diana’s Story

It just didn’t make sense, the constant tiredness, being lost in school, the pauses when she talked. I had never seen anything like that.

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Jessica’s Story

Ketogenic diet is having a huge impact on Jessica’s quality of life. We can’t emphasise enough that we have our little girl back, her energy levels have returned, she is much brighter and alert and is back to being the active little girl she was, playing with her football team and attending her dance classes once again.

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photo of Kieran Dunn

Kieran’s Story

The conclusion was that he had epilepsy but without any known cause which is the case in about half of people diagnosed with epilepsy.

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Latest News and Research

We are delighted to share with you that we have been successful in securing funding from Pears Foundation and London Catalyst – a huge thanks to both for supporting this important initiative.
There are a wide variety of new technologies that are being developed to increase the accuracy of diagnosis and improve the management of epilepsy. In this blog we focus on just some of the medical devices and technologies available or being developed for self management of epilepsy.