The role of patients’ associations

Summary

The role of patient groups has grown steadily stronger since the first General Meeting of cancer patients in 1999 and the emergence of the rare diseases issue in the mid-eighties. This article demonstrates the role of a patient group (SOS DESMOIDE) gathering people suffering from a rare disease (the desmoid tumor) in the stimulation of scientific and medical research as well as the improvement of patient care, information and support provided to patients. It substantiates these elements with numerous socio-medico-psychological surveys, scientific publications and medical research implemented by medical teams and supported, even sometimes initiated, by SOS DESMOIDE. This research effort illustrates the significant impact of a partnership between patients and physicians-researchers on medical and scientific breakthroughs in a specific pathological field.