Touch FXS Study
TouchFX study - Touch sensitivity in fragile X syndrome Researchers from the Patrick Wild Centre are currently looking for volunteers to...
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- 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...
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- 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...
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- 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....
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- 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
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- 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
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- 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
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- 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.
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- Jan 3, 2023
Newborn bloodspot screening
An update from the Chair of our Board of Directors, Kirsten Johnson
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- Nov 8, 2022
The IGPrare European study
IGPrare European study recently explored experiences of families when sharing their diagnosis with family members: what were the results?
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