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undetected until major regression occurs at around one year of age, when children may lose acquired skills and become withdrawn.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
- [support@rettuk.org, info@rettuk.org]
- Website
- www.rettuk.org
- Scan to visit this website
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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