Content for Families, Carers and Professionals

Our Mission

CDKL5 UK is a UK-based charity that has been set up to raise awareness and vital funds for the global research effort. The Board of Trustees of CDKL5 UK is 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 an Orphan Disease, as it affects only a tiny percentage of the population.  Unfortunately, Orphan Diseases get little exposure by the pharmaceutical industry because they provide little financial incentive for the private sector to make and market new medications to treat or prevent them.  However, organisations such as Eurordis (www.eurordis.org) have become the voice for organisations such as CDKL5 UK across Europe.  

CDKL5 UK is one of around 9 separate organisations that are raising awareness, supporting families, and raising 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.

Money raised for CDKL5 UK will be put to our key aims which are to promote relief, care and services to promote health, for persons suffering from and affected by CDKL5, in particular by:

  • Funding research worldwide for treating the symptoms, including epilepsy, and research into 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 participation in clinical trials for similar Rett-Like disorders and 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.