Health Milestones Matter: Insights for Families Living with Rett Syndrome

Health Milestones Matter

Living with Rett syndrome often means facing complex health challenges, from scoliosis and sleep apnoea to bone density and recurrent chest infections. To better understand these issues, Reverse Rett has been gathering vital data through our Health Milestones Survey.

In this workshop, we’ll share what the survey is revealing — especially from families with adults over 25 — and how these insights are helping us map care pathways, highlight red flags, and push for earlier interventions. Most importantly, we’ll show how this information is already being used to support families and influence clinicians.

Join us to learn what the data is telling us, what it means for day-to-day care, and how you can help strengthen this important project.