Information and Advice Service
Dunmow, UK
Fragile X Syndrome is the most common inherited cause of learning disability, and the only known genetic cause of autism, affecting 1 in 4000 males and 1 in 6000 females. The effects of Fragile X are variable, but include mild to severe learning disabilities, autistic-like behaviour, and language and communication skills. It is a lifelong condition with no cure. As a genetically inherited condition, diagnosis often has a major impact on a number of people in the same family unit. As many as 1 in 250 women and 1 in 800 men are carriers of the Fragile X gene, and may suffer from additional health conditions, such as early menopause and a Parkinsons-like condition (FXTAS) in later life. A lack of awareness in the medical community means the condition is commonly overlooked and even misdiagnosed. Many of the families we work with report that the professionals working with them have not heard of the condition, which can be very frightening when first diagnosed. We are the only charity in UK providing information, support, and guidance to anyone impacted by Fragile X Syndrome, as well as the professionals who work with them. We have 3 dedicated family support workers, each a specialist in Fragile X, who work with adults, children, parents, extended family, carers, schools, and other health professionals to ensure the specific needs of every individual are met. With the right support, we can create a brighter future.
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