Support today, hope for tomorrow
Support helpline: 01582 798911 other ways to get in contact


We strive to be at the end of the phone when a family calls whether that is for someone who is newly diagnosed or someone dealing with the everyday challenges that Rett syndrome presents. Without any government funding to supply these services, that are frequently referred to as a lifeline, keeping them going is a constant challenge. There are lots of way you can get involved whether that is through volunteering or raising funds on our behalf. We will support you every step of the way. Together we can change lives for the better and give people with Rett syndrome and their families a brighter future.

Find out what what your money  supported  last year infographic 2015 16

What difference does the work you funded  make to our families?  Family Services Evaluation 2016 results.

88% of families said that Rett UK helped them to get appropriate treatment for the person with Rett syndrome they care for

84% of  families said they had increased ability to deal with difficult situations and bounce back

76% of families said Rett UK increased their knowledge and understanding of Rett syndrome

88% of families said they had increased confidence when it came to dealing with health and social care professionals



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susanne and mia


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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Rett UK are a lifeline to us Rett Families. I don’t know what I would have done without them.

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