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

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

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...
If you were asked “What has EpiCARE done for r(20) syndrome?” and whether Allison devoting significant time to EpiCARE adds value for you as members of Ring20 the charity, what would you say?