We have a better understanding of Fragile X Syndrome (FXS) and associated conditions than ever before. Now more than ever, it is crucial to take into account the FXS community’s opinions on the directions that research should take in the future. Enabling such opportunities is the first step in fostering a person-centred approach to FXS research. This approach ensures that it is the voices of the individual and their families and carers which are the focus of future studies, and moves away from a medicalised view of people with the condition.

The aim of this report is to document the priorities for research of individuals with FXS and their families, internationally. We report findings from the FXS community members from 21 countries, collected via an online international survey.