site logo



Children who have a a genetic condition are likely to pass through many transitions, including frequent educational transitions, as well health care transitions that occur as they move from pediatric to adult health care. 

By transition, we mean a change or passing from one setting/grade/care system, etc., to another. This is an "ongoing, collaborative process that involves preparing for, facilitating, and adjusting to a shift" to more and more independence, according to the NCC (National Coordinating Center for the Regional Collaboratives) health care transition definition

The impact of transitions not only affects the child but also the family. Often parents have become accustomed to trusted allies/staff and have to end those relationships and forms new ones.