The Transition work group addresses the barriers facing young adults with genetic conditions who are transitioning from pediatric to adult health care.
The work group is reducing barriers to care by gathering information on the status of healthcare of young adults with genetic disorders, developing tools to assist in Transition, and increasing awareness and support for successful Transitions by sharing experience, information and expertise.
Why It is Important
Each year about 450,000 young adults with special healthcare needs move from the pediatric to the adult healthcare system. Due to medical advances, many more than ever before are surviving to adulthood. For these individuals, the progression to adulthood and independence includes managing a complex health condition. Those with special healthcare needs, including metabolic disorders and other complex conditions, are at increased risk and require more support.