The economic cost of living with a rare disease across Europe

Although rare diseases affect a relatively small number of patients, collectively there are an estimated 30 million people in Europe living with 6,000-7,000 known rare diseases (RDs). There is growing recognition of rare diseases as a public health concern, given the many social, mental, and health challenges facing Persons Living with a Rare Disease  (PLWRD) and their caregivers. There is scarce information about the economic impact on (PLWRD) and society as a whole, and this study conducted by CRA’s Tim Wilsdon, Kirsten Axelsen, Rajini Jayasuriya, and Charlotte Poon, is aimed at addressing that information gap.

By undertaking one of the largest surveys of PLWRD and their caregivers, specifically focused on the economic impact of 43 RDs across nine European countries, the authors estimate the economic costs for patients and society related to healthcare service utilization, ability to work, and home or transport modifications, as well as measures of health-related quality of life (HRQoL). The study concluded that the collective cost of RDs incurred by PLWRDS, their families, and caregivers represent a major public health challenge, requiring immediate and sustained prioritization by policy makers.