The European rare diseases project BURQOL-RD is coming into its most important stage. It will address the socio-economic cost and health-related quality of life of patients with rare diseases and their caregivers through online surveys. The active participation of patients in this project is crucial because it is the very first attempt to explore and define the socio-economic burden that patients and their families and society as a whole experience for rare diseases, and to address and study the health-related quality of life of patients with rare diseases and the effect that the disease has on their everyday emotions and perceptions. BURQOL-RD aims to form a new – improved, more comprehensive and more fair understanding of the problems of the people with rare diseases and their families, their concerns and needs. The survey is completely anonymous and consists of two parts – for the patient and for his/her main caregiver. The patient section is in two versions – for children (under 18) and adults. The study is targeting 10 different rare diseases and is available online on www.burqol-rd.eu/bg.html. Take part in the study. In this way you are not only helping yourself, your family and your patient association, but you are also helping the society and the whole of Europe!
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