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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

Jaevin’s Story

Jaevin’s epilepsy has gotten worse over the years. He has been induced in several comas every year since 2015 n the ICU for status epilepticus for several days at a time until the neuro team found a concoction of medication that would calm his seizures down.

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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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Latest News and Research

Want to know more about our Ring20 Patient Experience Survey 2023? Read on...
Want to know what impact the work of Ring20 (the charity) has? Read on...
We interviewed three families living with r(20) syndrome. Here's what they had to say...