For persons with serious inherited metabolic disorders there is presently no coordinated, client focused program for continued support and effective treatment as the transition is made from pediatric to adult care. There is one successful example: cognitively normal young adults with phenylketonuria are beginning to be successfully transitioned to adult care. However, there are other groups of individuals with more difficult metabolic problems and for whom fewer services are available.
Significant medical concerns have been identified for young adults ready for transition. These include:
Other, non-medical problems such as the need for an organized supported living
situation also exist.
To provide information and assistance to young adults with metabolic disorders transitioning to adult care. To provide knowledge and assistance to their health care providers.
An innovative and comprehensive approach will be developed to enable young adults with metabolic disorders to transition to adult based care. The general goals of the project will be to: 1) provide skills to young adults with inherited metabolic disorders that will enable self care and self advocacy and 2) provide knowledge and skills to health care providers for the effective health care of these persons.
C. Ronald Scott, MD
Cristine Trahms, MS, RD
Sue McDonald, Parent
Michael Raff, MD
Robin Bennett, MS, CGC