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New research from the Telethon Institute has shown that children with an intellectual disability are up to 10x more likely to be admitted to hospital.
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.
There is an urgent need to develop high-quality falls prevention services for older adults with intellectual disability
For mothers with intellectual disability, modifiable risk factors for adverse outcomes need addressing
People with intellectual disability fall at a younger age compared with the broader community