This statement calls for a shift in Fragile X Syndrome research and treatment toward more holistic, ethical, inclusive, and person-centred approaches that reflect the full range of strengths, challenges, and lived experiences of people with FXS and their families. It emphasizes the need for integrated care, meaningful and safe clinical trials, and active involvement of individuals with FXS and their families to ensure that scientific progress translates into real-world improvements in quality of life, wellbeing, and independence.

You can read the peer-reviewed scholarly research paper on the Wiley Online Library here