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Rett Disorders Alliance of the UK!

Rett Disorders Alliance of the UK

Following on from the announcement earlier this year of the alliance between Rett UK and Reverse Rett, we are delighted to announce the formation of the Rett Disorders Alliance of the UK.

The Rett Disorders Alliance consists of Charities or patient groups which have direct or indirect involvement with issues relating to the management of symptoms, treatments or general condition of people with Rett and Rett-like Disorders in the UK.
We are pleased that Rett UK is part of this newly formed Alliance and look forward to working together with the other groups involved to collaborate on shaping a more positive future for people with Rett and Rett-like Disorders in the UK.

Rett UK, Reverse Rett; Cure Rett; Reverse MECP2; FOXG1 UK; CDKL5 UK; Rett Education UK.

We are Rett UK (formerly known as the Rett Syndrome Association UK). We are the only charity who provide professional support to people living with Rett syndrome across the UK.


Rett UK 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 and email support, co-ordinates Rett specialist clinics in conjunction with the NHS, organise support groups and have a dedicated parental contact network.


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





We provide the following services for parents, carers, families and professionals: