As rare disease patients approach adulthood, they face the transition from parent-supervised pediatric care to more independent adult models whereby they take ownership of their care. This change can seem daunting for patients and parents, especially when dealing with rare disorders that involve multiple specialists that may be part of a care team.
Join NORD and their panel of speakers to learn how to plan for this change and to hear from a mother and son, who will share their experiences transitioning from pediatric to adult care as a family living with Congenital Bilateral Perisylvian Syndrome (CBPS).
April 21, 2021
2:00 pm - 3:00 pm