The Sickle Cell Society
Who we are
There are 240,000 people in the UK who are carriers of the sickle cell gene and about 13,500 people have a sickle cell disorder - making it the most common inherited blood disorder in the country (NHS Sickle Cell and Thalassaemia Screening Programme, London: NHS 2006). Approximately 350 babies are diagnosed with the disease every year, making the disease even more common than cystic fibrosis in England. Sickle cell disorder affects the normal oxygen carrying capacity of red blood cells. The symptoms can include severe anaemia, intense pain, damage to major organs and infections. Although there is no routine cure for sickle cell disorder, patients can be supported to manage their pain, and regular monitoring can help to avoid life threatening complications such as stroke. We are the only national charity providing services to individuals, families and carers affected by the condition as well as health and social care professionals and the local community. Our services include advocacy, information, advice, respite support services, access to local support groups and centres, annual children’s holiday, welfare and educational fund, hold talks, seminars and training, assisting in research and lobbying.