Rett’s syndrome is a genetic neurodevelopmental disorder with brainstem immaturity that affects one in 10 000 women. The condition shows the importance of the brainstem in cardiorespiratory medicine. There is a lack of understanding of the cardiorespiratory disturbance in the disorder within the medical community, which makes management a challenge. Therefore an international group of experienced medical practitioners from various disciplines gathered in the Swedish National Rett Centre, Frösön, to collate their experience on Rett’s syndrome and provide a practical management strategy for all health-care tiers: the Frösö Declaration.
In the Frösö Declaration, we are convinced that clinical treatment of Rett’s syndrome should not be based on personal anecdotal experience and declare that understanding the cardiorespiratory features is the key to providing appropriate and effective management.