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Improving the Trial Experience for Rare Disease Patients: Identifying and Overcoming Obstacles
Session Chair(s)
Kelly Franchetti, RN
Global Head- Growth and Insights
Savvy Cooperative, United States
Participants will engage in an “overcoming obstacles” activity designed to encourage collaboration among rare disease patients, trial sponsors, and advocates. You will identify obstacles to trial participation and work to develop creative solutions.
Learning Objective : Describe valuable and detailed input from patients on clinical trial design; Design patient interactions that encourage collaboration among patients, sponsors, and advocacy group; Explain how to optimize clinical trials to ensure they meet the needs of rare disease patients.
Speaker(s)
Patient Perspective
Kim Stephens, PhD, MA
Project Alive - Hunter Syndrome, United States
President
Industry Perspective
Kelly Franchetti, RN
Savvy Cooperative, United States
Global Head- Growth and Insights
Academic Perspective
Ellyn Getz, MPH
CSL Behring, United States
Director, R&D Partnerships
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