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Nov 14
What are the challenges of developing independence and supporting the quality of life of adult males affected by Fragile X Syndrome? Cardiff University
What are the challenges of developing independence and supporting the quality of life of adult males affected by Fragile X Syndrome? I...
67 views
Oct 22
Experience of Navigating Autism Assessment
The University of Surrey is currently conducting a research study that aims to explore the experiences of parents and carers who have...
45 views
Sep 3
Touch FXS Study
TouchFX study - Touch sensitivity in fragile X syndrome Researchers from the Patrick Wild Centre are currently looking for volunteers to...
42 views
Aug 29
Early Pathways to Independence in Numeracy for Children with Genetic Syndromes - MathMIND
Dr Gaia Scerif (Uni of Oxford), Dr Emily Farran (Uni of Surrey), and Dr Jo Van Herwegen (UCL) are currently looking for volunteers (4-9...
58 views
Aug 27
Help improve teacher training
University of Surrey are looking to improve a free teacher training resource. This resource will be focused on supporting children with...
29 views
Jul 3
Shape Research, Change Lives
Shape Research, Change Lives are setting priorities in genetic syndrome research. Below we have added some of their supporting documents....
25 views
Mar 8, 2023
International Survey on Pain Experience
An update from Dr Natali Bozhilova on international survey on pain experience in people with Prader-Willi, Williams and Fragile X syndromes
163 views
Feb 28, 2023
The importance of psychological support for parents of children diagnosed with a rare condition
An udpdate on a study into the importance of psychological support for parents/caregivers of children with a rare condition at diagnosis
124 views
Feb 23, 2023
Men with the Fragile X premutation, who have less than 70 CGG repeats, less likely to develop FXTAS
An update from Dr Natali Bozhilova on a recent study
414 views
Feb 1, 2023
The CONNECT-X Study
Efficacy and safety of cannabidiol-based hand gel (ZYN002) for young people with Fragile X Syndrome following a recent study.
182 views
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