Support today, hope for tomorrow
Support helpline: 01582 798911 other ways to get in contact


Our professional family support team at Rett UK are here to help you have your voice heard on the issues that are important to you. We want to make sure that your views and wishes are taken into account when important decisions are being made about your role as a carer or for the person with Rett syndrome you are supporting.

Advocacy is a process of supporting and enabling people to:

  • Express their views
  • Access information and services
  • Defend and promote rights and responsibilities
  • Explore choices and options

As a parent carer it is likely that you will be advocating for your daughter or son who has Rett syndrome. We can help you by providing advocacy statements to strengthen your case. For example, why having access to a robust communication system is so important for people with Rett syndrome or why have an base line ECG is essential.

Rett UK have over 30 years of experience of providing advocacy to people dealing with the everyday challenges of living with Rett syndrome. For more information please email or telephone 01582 798910.


Social Hub

Everything that is going on at Rett UK.

rare disease day photo Leah


For the past 3 months, I’ve had the pleasure of being able to write this series of blogs.  Sadly, this will be the last one I write, and I would […]

Read more


Follow us


Rett UK are a lifeline to us Rett Families. I don’t know what I would have done without them.

Read story

Sign up

Already have an account? Sign in

Sign in

Not a Member? Sign up for free today

Volunteer Sign in