Charity information


CDKL5 UK supports families and raises money for vital research into CDKL5. We are also raising awareness throughout the health and social care sectors throughout the UK and Europe.

Founded 2012

  • Mission statement

    CDKL5 UK is a UK based charity that has been set up to raise awareness and vital funds for the global research effort. The trustees of CDKL5 UK are made up of parents living with a child with CDKL5 as well as family and friends who all share the same goal. CDKL5 is classed as a orphan disease, as it affects a small percentage of the population. Unfortunately Orphan Diseases, get little exposure by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. However, organisations such as Eurodis, www. Eurordis. Org, have become the voice for organisations such as CDKL5 UK across Europe.

    CDKL5 UK, is one of around 9 organisations that raising awareness, supporting families and funds for research around the world. All these organisations have been set up by families of affected children and work in isolation of each other.

  • Aims

    CDKL5 UK aims to:

    • Funding research for treating the symptoms, including epilepsy and research the genetic cause of CDKL5 and disseminating or publishing the useful results of such research for the benefit of the public
    • Supporting participation into clinical trials relevant to treating the symptoms of, or development of a cure for CDKL5 or its sister condition Rett Syndrome.
    • Raising public awareness of CDKL5 and promoting a greater understanding of the condition within the general public and the medical and social professions.
  • Overview

    Established: September 2012

    Registered Charity Number: 1149099

    Board members: 9

    Volunteers: 9

    Phone number: 07976647218

    Address: 5 Thorne Lane Yeovil Somerset BA21 3LU

    View charity accounts on the Charity Commission website