The purpose of this study is to understand the course of rare genetic disorders that affect the brain. This data is being analyzed to gain a better understanding of the progression of the rare neurodegenerative disorders and the effects of interventions.
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Cognitive development
Timeframe: 15 years
Language development
Timeframe: 15 years
Gross Motor development .
Timeframe: 15 years
Fine Motor development
Timeframe: 15 years
Adaptive living skills
Timeframe: 15 years