Flexible, Patient-Centered Research Reveals the Physical, Emotional, and Social Impact of Living with Fabry Disease
Konovo’s Fabry Disease Patient Experience Study showcases how adaptive qualitative research can deliver powerful, patient-centered insights in rare disease markets. Using a mixed methodology of in-home interviews post-infusion, multi-stage online surveys, and follow-up calls, we explored patient journeys, infusion experiences, therapy perceptions, and unmet support needs for 19 UK-based Fabry patients. Overcoming recruitment challenges through partnerships with patient associations and targeted referrals, we coordinated around infusion schedules to ensure participation and engagement. This flexible, empathetic approach built trust with patients, provided actionable data for healthcare stakeholders, and will be published to help shape future Fabry disease care strategies.
