If I am doing research, where should I go to connect with people with Fragile X syndrome or associated conditions?

A key goal of the National Fragile X Foundation is to connect patients and families living with Fragile X to the researchers who are leading the clinical trials and research studies. We do this by offering targeted recruitment services through our extensive database and social media presence. Over the last decade, this highly successful service has been invaluable in reaching the Fragile X community and promoting participation in clinical trials, research studies, and surveys; allowing researchers to effectively recruit the necessary qualified participants.

The NFXF Research Readiness Program™ is a collaborative pipeline to support the development and execution of research in Fragile X-associated disorders. The program provides every researcher in the Fragile X field the opportunity to engage with experts and families to ensure proposed research is scientifically-sound, relevant, and patient-centric. We recommend all researchers engage in the program early for support from concept through the conclusion of the research project.

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