Atlantis Health conducted a global research project to explore the experiences of 45 people caring for a person living with a rare disease. More than half of the respondents were caring for someone who had been diagnosed more than 3 years earlier. Through a series of exploratory questions, the research uncovered 5 key themes central to the experience of caring for a person living with a rare disease.
Access the Evidence for Change - Rare Disease in Focus part 2: Understanding and supporting the caregiver experience.