The Fragile X Society Revenue

About The Fragile X Society

We provide information and practical guidance to support and empower individuals and families living with fragile X, and the professionals who support them. We also support research into fragile X to improve support and understanding now and into the future. Fragile X Syndrome is a genetic condition. It is the most common inherited cause of learning disability and the underlying cause of up to 1 in 20 cases of autism, yet many have not heard of it. Understanding the specific features of Fragile X can allow for better understanding for each individual, so that they can get the best support to help them to thrive. In the UK there are approximately 15,000 people with Fragile X Syndrome. Yet, many people’s needs are still being missed or overlooked due to a lack of diagnosis or lack of understanding of their condition. Fragile X Syndrome is just one of a family of Fragile X-associated conditions. Approximately 1 in 250 girls and women, and 1 in 800 men are Fragile X carriers, with smaller changes to their fragile X gene: around 160,000 people in the UK. As well as having the possibility of passing Fragile X Syndrome to future generations, carriers of Fragile X are at risk of symptoms including female infertility and early menopause, as well as a Parkinson’s-like condition that can cause tremors, balance and memory problems in later life (find out more about FXTAS). These issues are too rarely realised to be linked to Fragile X, leading to misdiagnosis and often a lack of appropriate information and support. Due to its inherited nature, multiple members of families are often affected by fragile X in different ways. Correct diagnosis is essential for getting all members the most appropriate support to remain in good health. We are the only UK charity dedicated to those individuals and families living with Fragile X. We provide support through specialised support workers, events, training, research, and more.

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