Rett Disorders Severity of Symptoms Survey


The Rett Disorders Alliance of the UK needs your help!

If you care about someone with Rett Syndrome and want to see improved medical/clinical services for people with Rett Disorders in the UK, please complete this survey before Monday 19th September 2016. It only takes about 10 minutes.

Your experience matters and will help shape improved services for our children so please take the time to complete this if you can.

The survey can be found here


More information about why we are asking you to complete this survey

The Rett Disorders Alliance of the UK and the UK Rett Disorders Working Group are currently working to identify areas of focus for better/improved clinical/medical provision in the UK for people with Rett Disorders.

As you will know, people with Rett Disorders usually struggle with multiple complex and often interconnected symptoms.

This survey is designed to find out which symptoms your daughter/son suffers from and which are the MOST DIFFICULT SYMPTOMS so that we can prioritise which areas to focus on.

The survey is a check box survey with no extensive answers required. It does cover as many symptoms as possible.

If you have any difficulty completing this survey, or if you need support after completing it, please do give us a call in the Reverse Rett office on 0161 434 8117 or call the Rett UK Family Support line on 01582 798911.

The survey can be found here

For more information about the UK Rett Disorders Working Group and the Rett Disorders Alliance of the UK, please see here.