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
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
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
236 views
- Feb 1
The CONNECT-X Study
Efficacy and safety of cannabidiol-based hand gel (ZYN002) for young people with Fragile X Syndrome following a recent study.
142 views
- Jan 3
Newborn bloodspot screening
An update from the Chair of our Board of Directors, Kirsten Johnson
139 views
- 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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- May 10, 2022
Update on inclusive terminology for Fragile X conditions
In April 2022, the term ‘mental retardation’ was officially removed from the expanded name of FMR1, and more inclusive names adopted.
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- Apr 13, 2022
Eradication of 'mental retardation' from language describing Fragile X Conditions
New and inclusive terminology to be adopted in scientific and clinical literature, improving respect for neurodiversity
255 views
- Mar 24, 2022
Barriers to participating in clinical trials
What are they and how can they be addressed by researchers of medication trials for Fragile X Syndrome?
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- Mar 16, 2022
Road to Recovery Project: overview, update and final recruitment call
Carers and their children with learning disabilities invited to share their experiences of COVID-19 pandemic using fun, inclusive activities
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