
This page lists materials referred to in the presentation Fragile X Care | Supporting Adults Ageing with Fragile X syndrome presented at the PANDDA Conference, 30 October 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.
Webinar recordings Fragile X Association of Australia featuring expert speakers in Fragile X syndrome including Dr Jonathan Cohen MD Medical Director of Fragile X Alliance Clinic in Melbourne, and Dr Marcia Braden PhD licensed psychologist (US).
FXAA webinar recordings and videos on youtube.
Highlights:
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
Dr Jonathan Cohen MD
Considerations for Adults with Fragile X syndrome
Medications and Fragile X syndrome