Griffin’s story – updated for National Epilepsy Month 2025
A Strong and Brave Future Two years ago Griffin lived a passionate and energetic life. His parents described his life as ‘normal, active and beautifully
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
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Ann’s story – One parent’s perspective
For Ann, being a mother has meant walking beside her daughter through the unpredictable world of Ring Chromosome 20 syndrome. From the first signs to
Ezra’s story
Every family living with r(20) has a rhythm, a daily routine built by love and patience. This story will focus on 16-year-old Ezra and how
Latest News and Research
We are delighted to announce that our 2025/2026 Annual Impact Report is now available to read. The 2025/2026 report highlights the incredible work we have carried out over the past year to support individuals and families living with Ring20 Epilepsy.
After a short pause, we’re delighted to share that Step Into the Ring (our monthly virtual support group for young adults living with Ring20 epilepsy) is returning on the last Sunday of each month at 11am (UK time).
In June, we launched our Families Liaison Project, which was created to provide support and information for families living with Ring20 epilepsy. Today, we’re speaking with Sarah, the project’s Families Liaison Officer, to learn more about the initiative and her work.
