The EU-funded BURQOL-RD Project is now officially finalised. The main aim of BURQOL-RD was to generate a model to quantify the socio-economic costs and Health Related Quality of Life (HRQOL), of both patients and caregivers, for to 10 rare diseases in different European countries.
The results from Bulgaria have pointed out the difficult access to specialised medical and social care for patients with rare diseases in the country. The average socio-economic burden per patient is significant – from 4 520.99 (BGN, 2011) in Prader-Willi syndrome up to 42 582.16 in Cystic Fibrosis. Short results can be found here. Full analysis of BURQOL-RD data per country and per disease would be published in a special issue of the European Journal of Health Economics. BURQOL-RD coordinators and ICRDOD wish to express gratitude to the Bulgarian patient organisations and medical professionals who have contributed to conduct the survey in Bulgaria.
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