Change for Good in  Rare Disease

Download the Evidence for Change report

Driving behavior change—be it promoting screening or encouraging treatment initiation—starts with a deep understanding of patients’ needs and experiences. Atlantis Health conducted a global research project to explore the experiences of 117 people across the world (72 patients and 45 caregivers) living with a rare disease. We included exploratory questions and psychometrically validated questionnaires to uncover the 5 key unmet needs and perspectives of people living with rare disease.