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Session 6 Track 1: Preserving Patient Trust in Rare Disease: Advancing Patient-Centric Engagement When Development Ends
Session Chair(s)
Michael DeLuca, PharmD, MBA, MS, RPh
Executive Vice President, Global Medical Affairs & Medical Information, EVERSANA, United States
Exploring what sponsors owe rare disease patients when development stops, and the dissonance felt when patient-focused intent meets difficult development decisions, and how courageous communication can preserve trust and respect patient contributions.
Learning Objective : 1) Describe what meaningful patient engagement requires when rare disease development is discontinued, including how disappointment, limited treatment options and prior patient contributions shape community expectations 2) Identify communication principles that help sponsors preserve trust with patients and caregivers after difficult development decisions
Speaker(s)
When Development Stops, What do Sponsors Owe Patients? Preserving Trust in Rare Disease Patient Engagement
Representative Invited
Principal - Patient Engagement & Commercial , Sprout Health Solutions Ltd, United Kingdom
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