Rett UK

Rett UK

At a glance


  • Children / families
  • Counselling / advice
  • Health and well being / research and care

Other details

Geographical remit: 
National - Britain


Rett UK provides information, advice and guidance to families, carers and professionals who are involved in supporting people with Rett Syndrome; a rare neurological disorder which affects 1:10,000, mainly females, and is present at conception but does not show itself til around the age of 1 year when sufferers regress and lose previously acquired skills. Most people with Rett Syndrome have profound physical and learning disabilities which means they are dependant upon others for the rest of their lives.
Rett UK services include professional support via a telephone helpline, regional days, clinics and family weekends as well as numerous publications, an informative web site and social media links.
Our services are vital to the health and well being not just to the Rett sufferer but to the people who are supporting them; giving them specialist advice which is not generally available within the wider health care sector, supporting families through key stages such as early diagnosis, transition and bereavement.


Rett UK holds regional days where professionals and families can meet, host specialist clinics and provides a professional telephone helpline.

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