ABSTRACT
The intervention of genetic knowledge to explain Rett syndrome as a genetic condition has wider impacts on this entity. As we have seen, the relationship between genetic science and clinical medicine may not be perfectly aligned, and the identification of the condition is not always straightforward. In addition, there are many interested parties, whose interests may vary and whose expert understandings of the syndrome itself may differ. This transforms the possibilities of Rett syndrome and the ways in which it may be understood. We have seen the mobilization of lay people around Rett syndrome and we now turn to the ways in which parent organizations and biomedical scientists come together to develop a programme of biomedical research in the field of Rett syndrome.
