Sickle Cell Society

Around 19,000 people in the UK are living with sickle cell disorder (SCD), a serious inherited blood condition that affects the shape and function of red blood cells. These cells can become rigid and crescent moon, or sickle-shaped, restricting blood flow and causing episodes of severe pain, alongside complications such as infections, organ damage and stroke. It is a lifelong condition that significantly impacts quality of life and life expectancy.

The Sickle Cell Society is the UK’s only national charity dedicated to supporting people affected by sickle cell disorder. Established in 1979, the organisation works with individuals, families, clinicians, policymakers and industry to provide direct support, improve care, reduce inequalities and ensure that lived experience informs service design and delivery.

Despite its prevalence, sickle cell continues to face disparities in awareness, investment and access to specialist care. Outcomes can vary significantly depending on where people live and the services available to them. While a new advanced therapy has emerged, a broader range of safe and effective treatment options is still needed, and many people living with the condition continue to experience inconsistent standards of care.

The Society plays a key role in advocating for equitable, high-quality sickle cell services and in advancing improvements that matter to people living with the condition. Increasing awareness, improving data and supporting more consistent standards of care across the system are all central to improving long term health outcomes. Sickle cell is more commonly seen in people of African, Caribbean, Middle Eastern, Indian and South American heritage, but it can affect individuals from any background. Improving understanding and access to testing is an important part of enabling earlier diagnosis and better lifelong care.

Website: www.sicklecellsociety.org
Social Media @SickleCellUK
Email: info@sicklecellsociety.org

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