Imagine being told the toddler you thought was healthy, but perhaps slow to progress, had a rare and devastating disability leaving them needing lifelong 24/7 care. That is the reality for parents receiving a diagnosis of Rett syndrome. Rett syndrome changes lives irrevocably. Rett UK is the only UK charity providing professional support to those families via a national telephone helpline, support groups, parents contact network, specialist Rett clinics, comprehensive written & web resources, regional events & Family Weekends.

Did you know...

Started in 1985 by a mum whose daughter was one of the first to be diagnosed in the UK, Rett UK has celebrated its 30th Birthday. Rett syndrome had not been mentioned in English language papers until 1983 but on average 30 girls are born every year in the UK and 6 boys. Rett UK has supported over 2000 families, held 28 Family Weekends, 12 Regional Days and over 300 clinics. Last year, our telephone and email support helpline dealt with over 2500 individual points of contact with family members; an increase of 71% on the previous year.

What makes Rett UK different

We are the only UK Rett charity providing professional family support. A national telephone helpline answers calls from desperately worried parents, not just at the point of diagnosis but also at key transitions and moments of crisis. Local support groups and a parent-to-parent contact network provide the contact with other families that is so crucial in reducing isolation. Access to high quality seminars from the UK’s leading experts on Rett syndrome at Regional Days and Family Weekends provides families with up to date, accurate information in subjects like epilepsy, spinal surgery and communication, helping them with management of the disability.

Other ways to support

We have lots of volunteer opportunities both in the office and at our events and also on our trustee board. We would like people to find out more about us via our Facebook and Twitter sites so please like us and follow us. Perhaps there is a business who is interested in corporate support or payroll giving. Could you leave a legacy to Rett UK? Anyone interested in helping by organising an event of taking up a challenge for us please get in touch. We can support you every step of the way


Victory House, Chobham Street


Contact Number

01582 798910