Supporting Families


Transitioning Your Child's Care to Adult Health Care Providers

Thursday, November 2
2:00 PM - 3:00 PM
Location: Seabreeze

Target Audience: Family Members

We will introduce the session by telling the story of how four parents of children with a rare genetic disease, tuberous sclerosis complex (TSC) came together in 1974 to found the Tuberous Sclerosis Alliance. Among other manifestations, individuals with TSC can experience intellectual disability, epilepsy, autism, lung disease, and tumors of the heart, kidneys, and other organs. The complexity of TSC's manifestations makes it more difficult for affected individuals to find knowledgeable health care providers and contributes to the difficulty many of them face when attempting to transfer their health care to adult physicians. Other individuals with chronic, multi-system conditions face many of the same challenges when attempting to shift care to adult health care facilities and physicians. Drawing from our experience with children and adults with TSC, we will discuss common challenges and barriers that people encounter when seeking comprehensive care for themselves or a child with physical and intellectual disabilities. Planning for health care transition should begin a few years before the expected transfer date. Individuals who need multiple specialists in addition to a primary care physician often benefit from staged transition instead of simultaneously shifting care to multiple new physicians.

Learning Objectives:

Jo Anne Nakagawa

Director of Clinical Projects and TSC Clinic Liaison
Tuberous Sclerosis Alliance
Silver Spring, Maryland

Jo Anne has a BA in Biology from UCLA where she worked for 30 years until she joined the Tuberous Sclerosis Alliance (TS Alliance) in 2005. Her UCLA experience includes 16 years in regulatory management and coordination of pediatric epilepsy clinical trials and oversight of physician-initiated investigational new drug trials. One of these clinical trials for treatment of newly diagnosed infantile spasms helped get vigabatrin approved in the United States. At the TS Alliance, she is the administrative project leader of the Tuberous Sclerosis Complex (TSC) Natural History Database (NHD) and the TSC Biosample Repository (BSR). The NHD was launched in 2006 and stores de-identified clinical data on more than 2,000 individuals with TSC. The BSR houses human biological samples from participants enrolled in the NHD. Jo Anne also directs the TSC Clinic Designation Program and facilitates communication between affected families and the TS Alliance Professional Advisory Board.


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E. Steve Roach

Chief of Pediatric Neurology
Nationwide Children's Hospital and Ohio State University
Columbus, Ohio

E. Steve Roach, MD, holds the Wolfe Chair of Child Neurology and serves as Professor and Chief of the Division of Child Neurology at Nationwide Children's Hospital and The Ohio State University College of Medicine in Columbus, Ohio. He has written or edited nine books and written over 200 journal articles and book chapters. Dr. Roach has served as the Editor-in-Chief of Pediatric Neurology since 2013. He has served as President of the Child Neurology Society and also as Chair of the Section of Child Neurology of the American Academy of Neurology.


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Transitioning Your Child's Care to Adult Health Care Providers


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