Every year on 19 June, World Sickle Cell Disease Day is observed, providing an important opportunity to shine a spotlight on one of the most common inherited haemoglobinopathies worldwide and to promote greater awareness of a condition that is still often poorly understood and surrounded by myths and misinformation.

Sickle cell disease is a rare genetic blood disorder that affects individuals from birth and can have a significant impact on quality of life. It is caused by an abnormal form of haemoglobin that causes red blood cells to take on a characteristic “sickle” shape, impairing normal blood flow and increasing the risk of symptoms and complications. The disease is not limited to painful crises, which are its most widely recognised feature; over time, it can affect multiple organs and requires regular monitoring and specialised multidisciplinary care.

Over the past decades, advances in research and therapeutic innovation have profoundly changed the natural history of the disease. Early diagnosis, screening, prevention programs, and specialist follow-up now make it possible to improve clinical management and reduce the risk of complications, while the development of new treatment options, including advanced and gene therapies, is opening increasingly promising prospects for the future.

World Sickle Cell Disease Day is therefore a key occasion to promote knowledge of the disease, raise awareness of the importance of screening and early diagnosis, highlight the value of research, and help overcome the inequalities and stigma that can still affect access to care and the quality of life of people living with this condition.

On the occasion of this Day, Fondazione Gianni Benzi is launching a new series of FGB Pills dedicated to sickle cell disease, accompanied by a dedicated landing page featuring short educational videos designed to explain, in a simple and accessible way, the different aspects of the disease. These resources aim to provide useful tools for informing and raising awareness, while contributing to the development of a more informed and inclusive culture of health.

Because a rare disease may be little known, but information about it should not be.

Knowledge is the first step toward understanding. Understanding is the first step toward making a difference.