How much does Rett syndrome cost? 

Reverse Rett was recently given a pro bono grant from health economics and rare diseases specialists, Costello Medical.  This project is aimed at establishing a cost of illness model for Rett syndrome in the UK in preparation for upcoming Health Technology Assessments of new treatments. 

Health Technology Assessments are the way NICE and SMC work to establish whether or not a new treatment is worth paying for by the UK’s National Health Service. This UK specific work on Rett will be really important to help demonstrate the need for treatments and cost savings here where we have a publicly funded health system under pressure.  

Our special thanks to Costello Medical, all the team involved in this important project and all the families involved in our focus group feeding back patient/family experience throughout the process. We can’t thank you all enough.