Do you love someone with Rett syndrome?

Holidays like Valentine’s Day are a good time to recognise our much loved children, young people and adults with Rett syndrome. But they are also an opportunity for Reverse Rett to try to bring more of our UK individuals with Rett on to the Rett Registry UK.  

Accounting for as many UK patients as possible is an important part of our work to prepare for UK Health Technology assessments.  

Health technology assessments in the UK are the processes that evaluate the effectiveness, costs, and impact of new medicines and treatments. 

For these assessments it is important for patient groups to be able to show that the number of affected patients in the country is about the same as the expected disease incidence. 

At the moment, only 41% of the expected number of UK patients with Rett syndrome are accounted for.

If you love someone with Rett syndrome, please share their photo with our Valentine’s Day frame and copy and paste this short blurb to help remind other people to get their loved one signed up:

<Person>has Rett syndrome and so I’ve signed them up for the Rett Registry UK. Being signed up for the Registry will help us get treatments for all our UK people faster. If you love someone with Rett, please sign up too. Here’s the link: rettregistry.uk  

Please email Ewelina at [email protected] with a photo, and she will be happy to assist you with this.