Dec 22, 2022BoardMeeting
BoardUniversity Of Minnesota Panel Discussion
The event featured a panel discussion regarding rare diseases, focusing on personal experiences of patients and families, the challenges of navigating the healthcare system for diagnosis and treatment, and the importance of research and advocacy. Topics included the alienation and isolation felt by those with rare conditions, the role of physicians and other care providers, genetic testing, and tissue preservation. The panel highlighted the University of Minnesota's designation as a center of excellence for rare diseases and the collaborative work in research and clinical care.