Type of service: Family support and information services

The Fragile X Society was formed in 1990 by families whose children had just been diagnosed with Fragile X Syndrome. At that time there were no facilities to support and inform families about any aspect of fragile X, and so the Society came into existence..

Discovering that your child has fragile X can be a devastating experience. We want families to have the opportunity of support from others who know the problems, and to have access to full information about the syndrome, including the latest medical, psychological and educational research findings. With a fuller understanding of the condition, parents can be far more constructive and effective in helping their children to reach their full potential..

The Society aims to:-.

• provide support and information to fragile X families from those who share and understand their concerns and needs.
• educate and inform the public and professionals about fragile X in order to raise awareness and understanding of the syndrome and so improve the care of all people affected by fragile X.
• encourage research into all aspects of fragile X and publicise the results.

Aimed at: Parent/carer of a child, Parent/carer of a young person, Parent/carer of an adult

Specialisms: Generic