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A severe neurodevelopmental disorder mostly affecting girls.

While individual diseases are rare, as a group, rare diseases are common. Recent estimates suggest that between 3% and 6% of the world’s population are affected by rare disease.

Our vision is to increase awareness and improve outcomes for children with movement disorders and other neurodevelopmental conditions impacting on motor function.

We aim to ensure that high quality outcome measures are available to evaluate treatments and services for children with disability rigorously. We aim to translate our research into resources to support families, carers and clinicians.

The Sibling Project focuses on the wellbeing, relationships and needs of children, adolescents and emerging adults who have a sibling with a developmental disability.

Developmental and epileptic encephalopathy (DEE) conditions are rare, and most have a genetic cause.

One of the many reasons for setting up the International CDKL5 Disorder Database was to learn more about this condition.