French Federation for Sickle Cell and Thalassemia patients' organizations

Sickle Cell Disease is the most common genetic disorder worldwide. In France, 22 000 patients are affected by this red blood cell disorder. Despite being a different disorder, Bêta Thalassaemia affects the same gene and requires the same expertise to be managed. Created in 1991, SOS GLOBI is one of the oldest patients' groups supporting and advocating for Sickle Cell and Thalassaemia patients in France. In 2006, this local patients group became the national federation for Sickle Cell Disease and Thalassaemia groups in order to bring the patients' voice further. We are involved at each level: from the healthcare system organization to national policies and field support for the patients