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The fifth Big Elders meeting/gathering was held on the Wednesday, 28th of February 2024 at Burswood on Swan.
This research project was part of the broader Ngulluk Koolunga Ngulluk Koort (Our Children, Our Heart) five-year (2016 to 2020) project.
The third Big Elders meeting/gathering was held on the 26th of February 2019 at Burswood on Swan.
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 Quality of Life Inventory - Disability
AuStralian Collaboration to Enhance Neuro-Development
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.