BURQOL-RD is a 3 year project under the 2nd Programme of Community Action in the Field of Public Health, that commenced in April 2010 and is promoted by the DG Sanco.

The main aim of BURQOL-RD is to generate a model to quantify the socio-economic costs and Health Related Quality of Life (HRQOL) , of both patients and caregivers, for up to 10 rare diseases in different European countries.

This model will be adaptable and sufficiently sensitive to capture the differences in the distinct Health and Social Care Systems in the EU Member States. Our hope is that, the information generated by the BURQOL-RD consortium will help to:

• Design future policies in the area of rare diseases, which will ultimately have positive benefits for EU citizens health, both that of patients and of their caregivers. Readily transfer the protocols established to other RD and to other countries.
  Compare the availability and access to specific health resources for specific RD in each country.
• Explore the potential relationships between HRQL and access to healthcare resources.

After a thorough selection process, a set of 10 rare diseases to be targeted was decided:

• Cystic fibrosis
• Prader-Willi Syndrome
• Haemophilia
• Duchenne Muscular Dystrophy
• Epidermolysis Bullosa
• Fragile X Syndrome
• Scleroderma
• Mucopolysaccharidosis
• Juvenile idiopathic arthritis
• Histiocytosis