
This page lists materials referred to in the presentation Fragile X Care | Supporting the Future for Adults Fragile X syndrome presented at the ASID (Australian Society of Intellectual Disability) Conference, 13 November 2025.
- Systematic Review: Fragile X Syndrome Across the Lifespan with a Focus on Genetics, Neurodevelopmental, Behavioral and Psychiatric Associations. Ann C Genovese, Merlin Butler. Genes, 2025.
“The focus of this article is to explore and describe the genetic underpinnings of FXS, identify associated developmental, behavioral, and psychiatric conditions over the lifespan, and provide a review of clinical features, therapeutic interventions including investigational treatments, and current research updates.”
- The Spectrum of Fragile X Disorders. Randi Jenssen Hagerman, Paul J Hagerman. The New England Journal of Medicine, July 2025.
- The Joys of Fragile X: Understanding the Strengths of Fragile X and Delivering a Diagnosis in a Helpful, Holistic Way. Jonathan Herring, Kirsten Johnson et al. Neurodiversity. 2024
- A Holistic Approach to Fragile X syndrome Integrated Guidance for Person-Centred Care. Kirsten Johnson, Andrew Stanfield et al. Journal of Applied Research in Intellectual Disability, 2024.
- Ageing with Fragile X syndrome: A scoping review [Unpublished manuscript]. Wu, J., Turbitt, E., Brown, W. T., & O’Donovan, M. (2025). [Unpublished manuscript]. Graduate School of Health, University of Technology Sydney.
Webinar recordings Fragile X Association of Australia featuring expert speakers in Fragile X syndrome including Dr Marcia Braden PhD licensed psychologist (US), and Dr Jonathan Cohen MD, Medical Director of Fragile X Alliance Clinic in Melbourne.
FXAA webinar recordings and videos on youtube.
Highlights:
Presentations by Dr Marcia Braden PhD
Understanding Anxiety and Behaviours in Fragile X syndrome
Fragile X syndrome and ASD: A Differential Diagnosis
Females and Fragile X syndrome
Presentations by Dr Jonathan Cohen MD
Considerations for Adults with Fragile X syndrome
Medications and Fragile X syndrome