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For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with Cornelia de Lange syndrome. 

The involvement of individuals with CdLS and their care providers in health-care decisions is essential. Intellectual disability and executive functioning impairments in individuals with CdLS can reduce an individual’s ability to make decisions. In these instances, care providers and health-care professionals have to decide what is best and document an individual’s values, preferences and quality of life.

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