Learn from and connect directly with patients and caregivers
Patient Journeys is a method for building databases of rare disease-specific “patient journeys”
Online communities can be helpful, but are not structured and systematic
Patient Journeys is designed to learn about patients with rare diseases by collecting and analyzing data
Patient Journeys is also a way to maintain a dialogue with patients/caregivers focused on the areas they care most about…disease and treatment education
0
patients and caregivers participatedBy collecting and analyzing patient journey data, we can identify patterns and insights that can lead to improved care and outcomes
Patterns of misdiagnosis
Barriers to treatment success
Issues and frustrations impacting outcomes
Best practices - proven insights and tips
Patient Journeys reports help patients and caregivers better understand what others with similar experiences have faced, providing insights, ideas, and information that can help them with their challenges
Benefits to Sponsors
Ongoing communication of branded or unbranded content
