Puneet Varma (Editor)

CDKL5 UK

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Founded
  
2012 (2012)

Focus
  
CDKL5

Founder
  
Carol-Anne Partridge

Location
  
Yeovil

Type
  
Charitable organisation

Registration no.
  
England and Wales: 1149099

CDKL5UK is a UK-based charity that has been set up to raise awareness and funds for the global CDKL5 research effort.

Contents

Mission

Money raised for CDKL5 UK will be put towards 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.

    • Scientific Advisory Group

    CDKL5 UK is committed to supporting research into the CDKL5 Disorder through the awarding of research grants from charitable funds raised with a hope to continuing support for both current and future projects. The Scientific Advisory Group advises the CDKL5 UK Board on research proposals, and consists of individuals with a wide variety of experience and expertise.

    Rett Disorders Alliance

    CDKL5 joined the Rett Disorders Alliance in July 2015 in an aim to collaborate on shaping a more positive future for people with Rett and Rett-like Disorders in the UK.

    CDKL5 Europe

    CDKL5 Europe is a group of patient organisations and family contacts, to support families and research for those living with CDKL5 in Europe.

    Big Lottery Fund

    CDKL5 were awarded £6,520 to develop their website and information materials, to raise awareness of the CDKL5 condition.

    References

    CDKL5 UK Wikipedia
    (Text) CC BY-SA