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

What are they and how can they be addressed by researchers of medication trials for Fragile X Syndrome?

Carers and their children with learning disabilities invited to share their experiences of COVID-19 pandemic using fun, inclusive activities

New research paper published in The Lancet which demonstrates that whole genome sequencing (WGS) can quickly detect neurological conditions