Project: Social Economic Burden and Health-Related Quality of Life of Patients with Rare Diseases in Europe (BURQOL)

Calculating the real cost of conditions for those affected by rare diseases

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Genetic Alliance UK is striving to help calculate the real cost of rare conditions through looking at the Social Economic Burden and Health-Related Quality of Life of Patients with Rare Diseases in Europe (BURQOL-RD). The results of the survey will be crucial to define the current consequences of rare diseases on society, and to assess the effectiveness of new policies and interventions, opening a way to study the cost-effectiveness of new treatments (e.g. orphan drugs).

The BURQOL-RD Project is a 3-year-project that addresses crucial questions for the rare diseases community. It goes beyond any previously implemented surveys by also considering the ‘overall cost’ (direct and indirect) of caregivers, who dedicate their time and energy to look after patients. In this way, BURQOL-RD will generate a complex and reliable estimate of the social economic burden and health-related quality of life of patients with rare diseases and their caregivers in Europe.

A set of 10 rare diseases are investigated by BURQOL-RD study:

If you are a patient or carer affected by one of the 10 conditions above. Please visit the BURQOL survey to submit your responses.

The Project is led by the Canary Foundation of Investigation and Health (FUNCIS) with the collaboration of 11 Associated Partners, 8 National Alliances including Genetic Alliance UK, 3 Umbrella Organizations, as well as hundreds of experts.

The Project is running parallel in the eight participating European countries: Spain, Bulgaria, Germany, Italy, the United Kingdom, Hungary, Sweden and France.

To find out more information about the study please visit the BURQOL website or contact