BURQOL-RD: Social economic burden and health-related quality of life in patients with rare diseases in europe
Most rare diseases are life-threatening, chronic and debilitating, requiring long term specialist and costly formal and informal care. The lack of effective diagnoses and treatments often underlies the shortened life expectancy and quality of life of these patients. The main aim of BURQOL-RD is to quantify the socio-economic costs and Health Related Quality of Life (HRQOL), of both patients and caregivers, in order to identify areas for future policies in the field of rare diseases.
Funded by the Executive Agency for Health and Consumers of the European Commission
Dr. Alexander Kuhlmann