Rare patient advocacy organizations are increasingly taking a lead in funding and focusing discovery on clinical research. With this responsibility comes the need for a strong research plan with required milestone assessments of progress. How should your organization structure its evaluation of the research plan? What data are important to gather from researchers? How should you measure success? How do you use this evaluation to build on your successes? This session will look at the answers to these questions and more.
Speaker: Tracy Dixon-Salazar, PhD, Director of Research and Strategy, LGS Foundation
Speaker:Karen Erickson, Associate Executive Director of Community Engagement, Alpha-1 Foundation
Day 2, Track 3