Pediatric to Adult Healthcare Transition: 2023 RARE Advocacy Summit Session
October 12, 2023
Pediatric to Adult Healthcare Transition: The RARE Disease Experience was part of the Empowering the RARE Individual track during the RARE Advocacy Summit, September 19-21, 2023 in San Diego, California
This presentation of recent research findings and personal rare disease stories highlights the unique experiences, perceptions, and support needs of patients and families during the transition–of–care process, as they confront challenges from lack of knowledge by providers and ill-equipped facilities.
* Kristin McKay, Executive Director, Project Alive
* Nathan Grant, Board Member, Project Alive
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