Help Us Build the Next Chapter of the Rett Syndrome Health Milestones Project 

Over the past year, many of you have taken part in our Health Milestones surveys, helping us to build a clearer picture of what life with Rett syndrome really looks like at different ages. 

The response has been incredible, and your willingness to share your family’s experiences has already shown us just how valuable this information will be. 

In August, we will be launching the next survey, this time focusing on children aged 3 to 10 years. 

Why are we focusing on this age group? 

The early years after diagnosis are often when families experience the greatest number of changes. It is a period of rapid development, new challenges, and important decisions around therapies, education and medical care. 

While there is published research on Rett syndrome, much of it comes from studies outside the UK and often focuses on clinical outcomes rather than the day-to-day realities experienced by families. We want to change that. 

By collecting information directly from parents and caregivers, we hope to build a better understanding of the health journey during these important years. This includes everything from mobility and communication to epilepsy, feeding, sleep, breathing, scoliosis, hospital admissions and the many other aspects of Rett syndrome that can affect family life. 

Just as importantly, we know there is no “typical” Rett syndrome. Every child follows their own path, and understanding that variation is essential. The more families who take part, the more accurate and meaningful the information becomes. 

How will the information be used? 

The survey responses will be completely anonymous and combined with those from other families. Together they will help us to: 

• identify common health milestones and patterns 

• provide families with realistic, evidence-based information about what they may expect 

• improve our educational resources and support services 

• strengthen conversations with clinicians and healthcare professionals 

• highlight where more research is needed, particularly within the UK. 

Our aim is not to predict an individual child’s future, but to help families feel better informed and less alone by sharing the experiences of our wider community. 

Look out for your invitation 

If you are the parent or caregiver of a child aged 3 to 10 years, keep an eye on your inbox during August, when we’ll send you a link to the survey. 

We know your time is precious, and we never take it for granted. Every completed survey helps us build a stronger understanding of Rett syndrome and, ultimately, enables us to provide better information and support for families now and in the future. 

Thank you, as always, for being part of the Reverse Rett community and for helping us make a difference together.