Imagine being told the toddler you thought was healthy, maybe a bit slow to progress, had a complex disability that would leave them requiring life long 24 hour care. Rett UK supports these families.
Rett syndrome (RTT) is a severe, life long, life limiting genetic neurological disorder and the most common cause of profound learning disabilities affecting mainly females (1 in 12,000). Although present at birth, it is usually undetected until a major regression occurs at around two years of age, when children lose acquired skills and the complexity of the disability is revealed. Rett UK is the only UK charity providing professional support to these families. Rett syndrome changes lives irrevocably.
Rett UK provides the emotional and practical support needed to deal with the everyday challenges that RTT presents. A national telephone helpline answers calls from desperately worried parents, not just at the point of diagnosis but also at key transitions and moments of crisis. Local family led support groups and a parent to parent contact network provide the contact with other families that is so crucial in reducing isolation. Access to high quality seminars from the UK’s leading experts on RTT at Regional Days and Family Weekends provides families with up to date, accurate information in subjects like epilepsy, spinal surgery and communication helping them with management of the disability.
Our vision is that everyone with Rett syndrome is diagnosed, their symptoms effectively treated and their families, carers and friends inclusively and appropriately supported. We aim to do this by delivering excellent support services to meet the short and long term needs of our families.
Rett UK aims to:
- • Deliver excellent support services to meet the short and long term needs of the Rett community;
- • Promote, support and encourage research to enable improvements in identifying new therapies and treatments for Rett people and ultimately a cure;
- • Raise awareness of Rett syndrome and its effect on individuals and their families;
Established: November 1985
Registered Charity Number: 1137820
Board members: 13
Full time staff: 3
Part time staff: 2
Phone number: 01582 798910
Address: Victory House, Chobham Street, Luton LU1 3BSView charity accounts on the Charity Commission website