Research shows that with adequate health care, people with Rett syndrome can live into their fifties. However, through our recent Mortality Survey, Reverse Rett has shown that outcomes for UK patients have diminished since the Pandemic. With over 50 competing and conflicting symptoms and a lack of understanding in the medical community, it is essential that families have the information that they need in order to effectively advocate for their children to access appropriate and timely care.

Both an Advocacy Support Worker and the Rett Registry Coordinator will play a key role in ensuring that families are empowered with the information and resources needed to keep their child as healthy as possible for as long as possible. This will be achieved by utilising the patient registry to identify ‘red flags,’ in a child’s health milestones and highlighting key actions, whilst providing the essential information and advocacy support the family needs to address any issues.