Charity information

Rett UK

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.

Founded 1985

  • Mission statement

    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.

  • Aims

    Rett UK aims to:

    • • provide professional family-support services, activities and events at a local, regional and national level
    • • educate health, social care and education professionals about Rett syndrome to enable quicker diagnosis and improved standards of care throughout the UK
    • • advocate for people with Rett syndrome to be given the support and resources needed to be active communicators
    • • promote, support and encourage research into new therapies and treatments for Rett syndrome
  • Overview

    Established: November 1985

    Registered Charity Number: 1137820

    Board members: 13

    Full time staff: 4

    Part time staff: 3

    Volunteers: 50

    Phone number: 01582798910

    Address: Rett UK, Victory House, Chobham Street< Luton LU1 3BS

    View charity accounts on the Charity Commission website
  • We Have Something to Say!

    A diagnosis of Rett syndrome (RTT) does not mean you cannot have a voice or do not have a ... More
  • The Black Dog and Rett Syndrome

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  • Rett UK Regional Support and Learning Hubs

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