[Associations, key players in the sickle cell patient's journey]

Abstract

The associations fighting against sickle cell disease contribute to the well-being of patients and their families by providing them moral, practical, financial, social and legal support. They provide information on the disease to patients and the public, notably through digital communication.

Keywords: association; droit des usagers; drépanocytose; information; sickle cell disease; soutien; support; user rights.