Research

7 days ago

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...

23 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...

43 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...

41 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...

57 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...

27 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

160 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

123 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

404 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.

181 views

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