Social economic burden and health-related quality of life in patients with rare diseases in Europe

BURQOL-RD was funded by the European Union in the framework of the Health Programme and it was coordinated by the Fundación Canaria de Investigación y Salud (FUNCIS) in 2010.

The main aim of BURQOL-RD was to develop a disease based model (instrument) to assess the impact of new health policies, interventions and treatments in the field of rare diseases (RDs) by means of quantifying the Economic Burden and Health-Related Quality of Life (HRQOL) for patients and their caregivers, from a macro societal perspective.  Besides, this instrument could be used to recognise, improve and update our knowledge of the socioeconomic impact of RDs in the European Union (both the direct and indirect costs), and their self-perceived health outcomes.

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