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The Sickle Cell Society , established as a registered charity in 1979, was founded by a group of people with sickle cell disease, their parents and their physicians, aims to improve understanding and management of the condition.
A cutting-edge gene therapy has been approved for NHS use for some patients with severe sickle cell disease. Casgevy, also known as exa-cel, was the first treatment to be licensed using gene ...
Graham Roger Serjeant CMG (born 1938) is a British medical researcher who studied sickle-cell disease in Jamaica, setting up screening programmes and a cohort study from birth. He directed the MRC Laboratories at the University of the West Indies and instituted the Sickle Cell Trust (Jamaica), a local charity. He has written four books and ...
She travelled to the United States to study counselling for sickle-cell and thalassemia centres as courses were not then available in the UK. In 1979, she worked with Dr Milica Brozovic to create the first nurse-led UK sickle-cell and thalassemia screening and counselling centre in London Borough of Brent. [8]
2013: The UK Strategy for Rare Diseases was launched in November following years of hard work by our Rare Disease UK campaign. 2014: Genetic Alliance UK published its first patient charter, on the NICE Highly Specialised Technology Programme. Five patient charters on access to medicines and on genome sequencing have now been published.
WellChild is a charity that provides care for seriously ill children and young people in the United Kingdom, founded in 1977. [1] The charity introduced and funds WellChild Nurses, who provide care and support to children and young people needing long-term or complex care, helping children to leave hospital and be cared for at home.
The B Positive Choir is a British choir. It contains 60 singers who suffer with the sickle cell disease or who have close friends or family suffering from it. The choir is led by Colin Anderson and Lurine Cato and features members from across the UK.
Sickle cell disease (SCD), also simply called sickle cell, is a group of hemoglobin-related blood disorders that are typically inherited. [2] The most common type is known as sickle cell anemia. [2] Sickle cell anemia results in an abnormality in the oxygen-carrying protein haemoglobin found in red blood cells. [2]