For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with sindrome di Cornelia de Lange.
In CdLS, the transition from paediatric (child) to adult care can bring about substantial challenges and require parental involvement.
Transitions are usually associated with changes in daytime environment, leaving home and social changes. An individual’s care changes from family-focused to individual-focused.
R68: Transition of care should be initiated at an early phase, with proper transfer of medical history and knowledge about the personal characteristics of the individual with CdLS. It is recommended that current and future health care providers jointly evaluate individuals with CdLS in order to smooth the transition.
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