Rare disease patients often find themselves with very little information or a roadmap of care for their disease. Clinical standards of care can make a tremendous difference for a rare disease community by establishing quality standards for diagnosis, treatment and monitoring. Rare disease patients often must become architects of their disease, working with clinicians to help design comprehensive care standards. Join these real world experts to learn about how to develop standards of care that integrate the perspectives of patients, scientists and medical professionals.
Speaker: Kathi Kinnett, MSN, APRN, Senior Vice President of Clinical Care, Parent Project Muscular Dystrophy
Speaker: Jeffrey Buchhalter, PhD, MD, Adjunct Professor of Pediatrics, University of Calgary
Day 2, Track 2