University of Surrey are looking to improve a free teacher training resource. This resource will be focused on supporting children with...

Shape Research, Change Lives are setting priorities in genetic syndrome research. Below we have added some of their supporting documents....

An update from Dr Natali Bozhilova on international survey on pain experience in people with Prader-Willi, Williams and Fragile X syndromes

An udpdate on a study into the importance of psychological support for parents/caregivers of children with a rare condition at diagnosis

An update from Dr Natali Bozhilova on a recent study

Efficacy and safety of cannabidiol-based hand gel (ZYN002) for young people with Fragile X Syndrome following a recent study.

An update from the Chair of our Board of Directors, Kirsten Johnson

IGPrare European study recently explored experiences of families when sharing their diagnosis with family members: what were the results?

In April 2022, the term ‘mental retardation’ was officially removed from the expanded name of FMR1, and more inclusive names adopted.

New and inclusive terminology to be adopted in scientific and clinical literature, improving respect for neurodiversity