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Learn how to coordinate care for individuals with rare genetic disorders in this 42-minute presentation by Dr. Angela E. Lin, MD, FACMG. Discover the crucial role of Patient Advocacy Groups (PAGs) and Disease Advocacy Organizations (DAOs) in providing community support and filling healthcare gaps after genetic diagnosis. Gain valuable insights into navigating the challenges of care coordination when traditional medical playbooks may not exist, and understand how to effectively support both patients and their families through their healthcare journey. Explore practical strategies for healthcare providers and families to work together, even in cases where a person's condition may be unique.
