Associate Professor Helen Leonard: Co-Head, Child Disability
I first heard about Rett syndrome when I was working as a medical doctor specializing in the care and management of children with intellectual disability.
The senior doctor in my department had just returned from a conference in Vienna which was one of the very first to focus on this condition.
It seemed to me such a strange disorder because it affected these usually beautiful-looking girls who were developing normally and then suddenly for no reason started to regress and lose their skills.
At that time, although a practicing medical doctor I was developing an interest in public health and epidemiology and whilst caring for patients with rare syndromes, many without names.
I saw the need to find a way to increase knowledge, awareness and better management for such rare conditions by collecting data both nationally and internationally on individuals with such disorders.
And this was really how the Australian Rett Syndrome Database, AussieRett and later, the International Rett Syndrome Database, InterRett came to be born!