Welcome to the home page for the Adult metabolic Transition Project

Mission

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

Problem

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:

• the need for complex nutritional therapy
• required ingestion of special metabolic formulae
• complex schedule of medication intake
• compromised intellectual and physical capabilities
• the need for life-long treatment
• reproductive concerns
• changing medical needs with age

Other, non-medical problems such as the need for an organized supported living situation also exist.