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£37k · Collected in 25
Founded
2016
Legal Status
CIO
Leader
Lydia Elena Hirst
Year ending 25
Income & expenditure over time
Europe
We provide support and information to individuals, families and health professionals who are affected by, or come into contact with Ring Chromosome 20 Syndrome, or r(20) for short, an ultra-rare disease, the main symptom being difficult to treat epilepsy.We raise funds to help promote research into r(20) to try to improve overall quality of life for those living with the disease.