We have setup this new small charitable organisation, operating from the UK (England) for those suffering from, or affected by Ring Chromosome 20 Syndrome. R(20) is a very rare epilepsy syndrome, resulting in intractable epilepsy with less than 100 cases reported worldwide in literature, though it is believed to be under-diagnosed. As such, families can feel isolated and many welcome the opportuni
ty to speak with others in the same situation, wherever in the world, in whatever language. Our aim is to provide a support group network in order to facilitate communications between those families
R(20) can be present in mosaic or non-mosaic form, with non-mosaic patients appearing to be more severly affected by the disease. Though a genetic condition, age of onset of seizures is varied amongst patients. As there is no specific treatment that appears to be successful in controlling seizures, families are keen to be aware of and/or partake or help fund research projects into the condition. Our aim is to facilitate fundraising for this cause to help those affected.
