The coordinating voice for Black, Asian, Mixed Race and Minority Ethnic transplant donation
Sickle Cell Society

First set up as a registered charity in 1979, the Sickle Cell Society is the only national charity in the United Kingdom that supports and represents people affected by sickle cell disease to improve their overall quality of life.
The Society’s mission is to enable and assist individuals with a sickle cell disorder to realise their full economic and social potential.

Sickle Cell Society

The main services we provide are:
  • Information
  • Advice
  • Advocacy
  • Raising awareness
  • Welfare support
  • Respite support services
  • Assist into research
  • Lobbying
  • Hold talks
  • Patient education seminars
  • Training
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Sickle cell disease is a long-term inherited condition that causes excruciating pain, can be life threatening, causes multiple problems such as specific severe infections, strokes, chronic fatigue, delayed growth and progressive tissue and organ damage. People are often admitted to hospital when they have a sickle cell crisis, given strong painkillers such as morphine to control the pain, intravenous therapy and antibiotics.  Some require regular blood transfusions to help reduce the number of sickle cell crisis as well as prevent life-threatening problems.

Sickle cell disease is the most common genetic blood disorder in the United Kingdom, 380,000 people are carrying the gene and roughly 15,000 actually have the condition.  In England, 1 in every 1,900 births is a child born with sickle cell disease. 1 in every 70 births of all babies will carry the relevant gene. 1 in 7 Black African, 1 in 8 Black Caribbean and 1 in every 450 White British newborns carries a sickle cell gene. Screening identifies approximately 350 babies born each year with sickle cell disorder.

For case studies, please visit the Real Lives section of our website: