General principles in the care of children and adolescents with genetic disorders and other chronic health conditions. American Academy of Pediatrics Committee on Children with Disabilities

The intent of this statement is to describe the breadth of issues that have special pertinence to pediatricians who care for children and families affected by genetic disorders and other chronic health conditions. The Committee on Children With Disabilities believes that because these children are leading healthier and longer lives, pediatricians are the more highly qualified to serve them, by virtue of their training and experience, and to provide them a "medical home." This statement is designed to assist pediatricians in the treatment of these patients by describing their potential roles in relationship to their patients' changing needs, as they work with various members of the health care team and as they respond to the requirements of government agencies and various third-party payers.

Published by Pediatrics, 1997. The guideline itself is at the source linked here.

doi.org/10.1542/peds.99.4.643