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The aim of this study was to examine trends of Down syndrome (DS) in relation to maternal age and termination of pregnancies (ToP) in 20 registries

This study describes the impact of having a sibling with Down syndrome or Rett syndrome using a questionnaire completed by parents.

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

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.

About 2 per cent of children are estimated to have an intellectual disability. The cause of the condition is unknown in at least 50 per cent of cases.

A severe neurodevelopmental disorder mostly affecting girls.