Rett Syndrome Association (Rett UK)- neurological disorder

Rett syndrome is a severe, lifelong neurological disorder. Rett UK offers professional advice and support for families affected by Rett syndrome

Rett syndrome (RTT), the most common cause of severe learning disability in females, was initially described in 1966 by Professor Andreas Rett. It is a rare neurological disorder affecting mainly females and very few males.

Although present at birth, it is usually undetected until major regression occurs at around one year of age, when children will lose acquired skills - this can be accompanied by distress and anxiety. 

Rett UK supports families living with Rett syndrome from point of diagnosis onwards.

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Contact Details

Telephone
01582 798911 01582 798911
E-mail
support@rettuk.org
Website
Rett UK
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Where to go

Name
Rett Syndrome Association UK
Address
Victory House
Chobham Street
Luton
Postcode
LU1 3BS
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Additional Local Offer Information

Local Offer

Description

The Rett website provides details of Family Support Workers and Information and advice for parents and carers. Membership of Rett UK is free for UK families/carers and individuals, regardless of where you live.  

In partnership with the NHS, Rett UK attends multi-disciplinary clinics across the UK. Giving families access to consultant paediatricians, physiotherapists and speech & language therapists. 

The Nottingham clinic is led by Dr Jane Williams, Consultant Paediatrician at Nottingham City Hospital. This is a children’s clinic (under 19's) and appointments are arranged well in advance.

For further information on how to be referred to a clinic contact the support team on 01582 798911 or email support@rettuk.org

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