Scleroderma Research:
BURQOL-RD
BURQOL-RD will generate a complex and reliable estimate of the social economic burden and health-related of patients with rare diseases and their caregivers in Europe.
Social Economic Burden and Health-Related Quality of Life of Patients with Scleroderma in Europe (BURQOL-RD)
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.
Scleroderma is among the set of ten rare diseases that are investigated by BURQOL-RD study.
World Scleroderma Day
Having a disease that nobody has heard of is a lonely business. When even the doctors cannot recognise it, or tell you what is going to happen, it is lonelier still. So World Scleroderma Day was created to tell people, including the medical community, what it means to have this disabling disease. June 29 is a day to recognise the bravery of those who live with scleroderma, and to demand equal treatment and equal care for people with scleroderma across Europe.
Every year, on June 29, we campaign for a world in which equal rights, treatments, and care are offered to people with scleroderma, and in which such rare diseases are not forgotten, but afforded the consideration and attention of other more common diseases.