Rett UK

Rett syndrome is a rare neurological disorder affecting mainly females and although rare, males can have Rett syndrome too.

It is present from conception and usually remains undetected until major regression occurs at around one year of age, when children may lose acquired skills and become withdrawn. Genetic but largely not inherited, Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome. People with Rett syndrome have profound and multiple physical and communication disabilities and are totally reliant on others for support throughout their lives. 

Rett syndrome was first described in 1966 by the Austrian doctor, Andreas Rett. It could occur in any family and affects approximately 1 in 12,000 girls born each year.


We are the only UK charity providing professional family support, information and advice. We aim to maximise the potential of people with Rett syndrome and minimise the impact.

Rett UK was started by a mum over 30 years ago and with a mum as the CEO today, we are here for you, and we truly understand what you are experiencing.

Are you working with someone who has Rett syndrome? As well as providing bespoke training to your team, you can access our telephone helpline or come to one of our regional roadshows to learn more about supporting someone with Rett syndrome to live life to the full.

Who to contact

Contact Name
Donna Tinch
Contact Position
Office Manager
Telephone
01582 798 911 -Support line 01582 798 911 -Support line 01582 798 910 - General enquiries 01582 798 910 - General enquiries
E-mail
[support@rettuk.org, info@rettuk.org]
Website
www.rettuk.org
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Where to go

Name
Rett UK
Address
Victory House
Chobham Street
Luton
Bedfordshire
Postcode
LU1 3BS
Directions to LU1 3BS

Time / Date Details

Session Information
Our offices are open Monday to Friday
from 9am to 4.30pm

Availability

Referral required
No
Referral Details

We are the only UK charity providing support, information and advice to families and professionals.

We aim to maximise the potential of people with Rett syndrome and minimise the impact.

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Disclaimer

This information has been collected from third party providers therefore the Reading Services Guide, Reading Borough Council (RBC) and Brighter Futures for Children (BFfC) cannot accept responsibility for the accuracy of this information and recommends that parents, carers, young people, residents and professionals check with providers regarding DBS (Disclosure & Barring Service) and OFSTED registrations and CQC registrations. Information collected by Reading Service Guide; is used solely to implement and supply the Family Information Service (FIS), Special Educational Needs & Disabilities - Reading's Local Offer, Adults & Carers Support Group and Reading Youth.

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Last Updated

Last updated:

Contact the Team

Family Information Service

fis@reading.gov.uk 0118 937 3777 OPTION 2 0118 937 3777 OPTION 2

SEND Local Offer

localoffer@reading.gov.uk 0118 937 3777 OPTION 2 0118 937 3777 OPTION 2

Adult & Carers Support

CSAAdvice.Signposting@reading.gov.uk 0118 937 3747 0118 937 3747
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