The Annual PPMD Connect Conferences have always been a haven for obtaining information around a broad range of topics applicable to the entire Duchenne community. Last year, we hosted a pre-conference meeting to address a single topic of need expressed by providers, parents, and patients alike – discrepancy in the care of people living with Duchenne.
Over a 24-hour period, 57 attendees concentrated on this important issue and the Transforming Duchenne Care Initiative was born. The first phase of that initiative is nearly complete and the second phase is well underway. A summary of that very important meeting was recently published in Neuromuscular Disorders.
This year, we have elected to expand on an additional area of need in the arena of care – transition. A growing population of adults living with Duchenne has resulted in the necessity of programing which will address the needs of individuals living with Duchenne and Becker muscular dystrophy, as they transition through pediatrics and adolescence to adulthood.
Today, 41 experts, including 6 young adults and 8 parents, will collaborate to develop a comprehensive transition program, including information, tools, and activities, which will assist with this complex process. Look for a summary of this exciting pre-conference meeting this Friday afternoon at the Annual Connect Conference!
PPMD continues to provide comprehensive updates to care, so that all people with Duchenne, at all stages of progression, are receiving the care they deserve.