The French Association of Rett Syndrome (AFSR) was created in 1988 by parents of little girls with Rett Syndrome with the aim of helping families, to raise funds for medical research and to publicize this disease. More than 25 years later, the spirit that drives this association is still the same. Recognized as a public utility in 2008, it now enjoys a real recognition in the medical community around this disease. Animated almost exclusively by parents volunteers of Rett girls, the association benefits from the support of its Medical and Scientific Council and systematically searches for solid partnerships to mount its projects.