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Planning for best quality of life

        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. 

Through advances in treatment, research and understanding of CdLS, people with CdLS are often living longer and fuller lives than ever before. 

Each person with CdLS is a unique individual who brings to the table a complex array of strengths and challenges, along with their own personality. 

Thus there can never be one program that is best for all people with CdLS. 

The goal of this topic is to provide guiding principles to help prioritize the varied developmental, therapeutic and educational needs of people with CdLS. To ensure wellbeing, meaningfulness of the person with CdlS and the complete family


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