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

En el SCdL, la transición de la atención pediátrica (niño) a la atención médica adulta puede acarrear retos considerables y requiere la implicación de la familia. 

Transitions are usually associated with changes in daytime environment, leaving home and social changes. El cuidado delpaciente pasa de estar centrado en la familia a estar centrado en la persona.


R68: La transición de la atención debería iniciarse lo antes psoible, con una transmisión adecuada del historial médico y de los conocimientos sobre las características individuales el paciente con SCdL. Se recomienda llevar a cabo un asesoramiento en común entre los profesionales actuales y los futuros, a fin de facilitar la transición.


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