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About Us

Rett UK is the only UK charity which provides professional support to people living with Rett syndrome across the UK.

Rett UK was founded in 1985 round a kitchen table by Yvonne Milne MBE. Since then we have grown to be the leading provider of information to not only families but also medical professionals new to the world of Rett syndrome.

Rett UK supports our families through a national helpline, including telephone, email and social media support, co-ordinate Rett specialist clinics in conjunction with the NHS, organise local support groups, as well as regional days and have a dedicated parental contact network. We also provide training for people who are supporting someone with Rett syndrome whether that is in a school, college,  day centre, supported living, respite or residential setting.

We are a small team working on a national level. We receive NO government funding and rely entirely on donations and grants to fund our work.

Over the last 12 months, Rett UK’s support team have helped over 500 individuals. Our Rett Syndrome Helpline, the only one of its sort in the UK, is staffed by professionals with many years experience in both childrens’ and adults’ services. As well as advising over the telephone we can:

  • Write letters on your behalf to e.g. local authorities, health authorities & GP’s to support your case.
  • Liaise with Rett syndrome specialists on your behalf and support you in person at specialist clinics across the UK.
  • Meet and advise you face to face, either at individual meetings or through our network of local support groups and Regional Roadshow events.
  • Provide professionally written information such as our acclaimed National Best Practice Guide and our Family Companion.
  • Provide training to the professionals in schools, residential homes and day centres that support your child.

Download our Rett syndrome general information leaflet and how we can help

Rett Syndrome Flyer

Aims and Objectives

Rett UK Accounts 2015 16

Rett UK AGM 2015

Rett UK Annual Review 2015

Rett UK 2014 2015 Accounts

Rett UK Annual Report 2013-14

Rett UK Annual Report 2012-13

Rett UK Articles and Memorandum

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susanne and mia

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Guest blog: Many thanks to Susanne Crosby, whose daughter Mia has Rett syndrome for letting us share her blog originally written for Scope after Susanne was involved with their Face […]

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