The Sickle Cell Society

The Sickle Cell Society was founded in 1979 by a group of healthcare professionals and people affected by sickle cell disorder. It is the principal health charity in Britain working for people with sickle cell disorder.

Sickle cell disorder collectively describes a group of chronic, debilitating, hereditary blood conditions in which a mutated form of haemoglobin distorts the red blood cells into a crescent or sickle shape at low oxygen levels. The resulting 'sickle cells' obstruct blood flow, which can lead to severe body pain (called a crisis), anaemia and damage to body tissues and organs over time.

Sickle cell disorder affects mainly people of African, Asian, Middle Eastern and Mediterranean ancestry.

Up to 15,000 people in the UK are believed to have sickle cell disorder and 300 babies are born annually with the condition. 240,000 people are thought to be carriers of the sickle gene.

The Sickle Cell Society's Education Fund provides financial support for individuals who miss out on school / college and need extra tuition, or help to individuals who require IT support.

The Children's Expert Patient Programme runs workshops for young people with a long term medical condition to help them increase their confidence, better manage their condition and improve their quality of life.

World Sickle Cell Day - June 19th

About the United Nations Resolution: On 22 December 2008, the United Nations General Assembly adopted Resolution A/63/L63 that recognises sickle cell disease as a public health problem and " one of the world's foremost genetic diseases." The resolution calls for member States and the organizations of the United Nations system to raise awareness of sickle-cell anemia on June 19th of each year at the national and international level.

Archbishop supports Sickle Cell Society 30th anniversary as UN recognises international significance of disease.

Reverend Dr John Sentamu, Archbishop of York, who co-hosted the reception and is chair of the NHS Sickle Cell and Thalassaemia Screening Programme comments: "I congratulate the Sickle Cell Society sincerely as it celebrates World Sickle Cell Day. Their work has been invaluable in providing better care and tackling serious health inequalities in the UK. When you consider that even 10 years ago, never mind 30, many clinicians had no understanding of this disease it is astonishing to see what the Society has achieved. I am pleased that sickle cell disease is finally getting the recognition it deserves as a serious genetic disease affecting a great number of people worldwide."

With 13,500 patients and 240,000 carriers, sickle cell is one of the most common genetic conditions in the UK. About 350 babies are diagnosed with the disease every year, making the disease even more common than cystic fibrosis in England.

Dr Jane Wai-Ogosu, Chairperson of the Sickle Cell Society adds: "The adoption of the UN resolution demonstrates how far we have come since the Society was founded 30 years ago. Lacking experience and knowledge of a disease which had not been seen to and extent in England, understanding of the disease was non-existent in 1979 and screening was not even thought of. World Sickle Cell Day will help us reach out to a wider audience and address the stigma surrounding this serious condition. There are still great challenges to meet so it's wonderful to have this chance to remember how far we have come."

Dr Allison Streetly, Director of the NHS Sickle Cell and Thalassaemia Screening Programme, comments: "Here in England, we are fortunate to have a nationwide linked antenatal and newborn screening programme in place. I am hopeful that UN recognition will not only raise awareness of sickle cell as a significant public health issue but will make our approach, a world first, best practice. We have already consulted with countries as diverse as Holland and Nigeria in implementing similar policies."