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Below is some information which can help children, young people and adults with Rett Syndrome safe and healthy until better treatments become available.
This information includes links to the most up to date guidance and services which can help manage specific symptoms, such as respiratory issues, constipation and sleep difficulties.
Whilst there are still no approved treatments for Rett syndrome in the UK, there are many things you can do to manage symptoms. The most important thing is to keep your child as healthy as possible until emerging treatments become available and accessible to them. We’re working every day to make this happen as soon as possible. The resources listed above and the health information videos on the link below can help you with the management of symptoms. We are always here if you have questions. Email us: [email protected] or get in touch via any social media channel.
The Rett Disorders Alliance UK (Reverse Rett, Rett UK and FOXG1) published the UK Rett Disorders Rett Syndrome Health Checklist in 2019. The Health Checklist provides information to help with symptom identification and management, including suggestions for drugs which may help and those which may cause difficulties for people with Rett Syndrome. There are also links to relevant research papers, case studies and best practice guidance.
We’ve developed the Rett syndrome Emergency Alert Card to convey the top line, most critical information about Rett syndrome to A&E staff in a crisis situation.
The card is credit card sized so it can be carried at all times so that it can be on hand in an emergency to help identify issues, improve care and potentially save lives.
Emergency health plans and/or hospital passports work well when alert cards cannot convey enough information or when there are specific issues affecting a patient which need to be highlighted.
This alert card provides:
To get your Alert Card, you must be registered on the Rett Registry UK. Email us here to let us know if you have not received your card within a week of registering [email protected]
Clinical trials of gene therapies for Rett syndrome are in Canada, USA, UK and Australia. The numbers needed for these first clinical trials are very small.
The best way to stay updated about UK Rett syndrome clinical trials is to register the person you care for on the Rett Registry UK. This gives us permission to contact you directly as and when any information about upcoming trial opportunities becomes available.
You can also contact the trial sites directly via email through details shared on the clinical trial listing on clinicaltrials.gov.
If you are interested in participating in UK clinical trials either now or in the future, it may also help to have your child seen by one of the clinicians involved in UK Rett syndrome clinical trials.
These are currently: Prof Banka-Manchester, Dr Lumsden-London, Dr Shetty-Edinburgh. Find more information about these clinicians and how to be referred to their clinics through the button below.
