About us
We are the UK’s patient charity for people living with sickle cell disorder. We believe that people living with the condition have the right to quality care.
We support and represent people, patients and families affected by sickle cell disorder to improve their overall quality of life.
Our aim is to support those living with sickle cell, empowering them to achieve their full potential.
About Sickle Cell Disorder
Sickle cell disorder affects around 17,500 people, and is the UK’s fastest growing genetic condition.
The condition affects the red blood cells, which carry oxygen throughout the body. In people with the condition, these cells are mis-shapen into sickles or crescent moons, rather than the usual round and flexible shape. They can get stuck in small blood vessels, blocking blood flow and leading to excruciating pain which requires hospitalisation and can lead to organ damage.
Complications include infections, delayed growth in children, stroke and acute chest syndrome. Mental health can also be impacted. Chronic anaemia causes severe tiredness, and with frequent medical visits; daily activities, work, relationships and education are all disrupted, which can take a huge toll on quality of life.
The condition comes with a history of chronic underfunding of treatments and care, evidence of failures in care, and attitudes in the care system underpinned by racism.
Our staff team consists of 19 skilled and highly committed staff, approximately 30 active volunteers, and a team of mentors located in London, Sheffield, Manchester and Liverpool.
We offer:
Information and advice. We run a telephone and email advice line.
Mentoring for young people. We run programmes in London, Sheffield, and the North West.
Advice about sickle cell testing.
Children’s holiday. We run a retreat each summer for families of children with sickle cell disorder.
Our campaigns include encouraging people from black heritage communities to give blood through our Give Blood, Spread Love, England programme. To help those affected by Sickle Cell, 250 blood donations are needed each day.
We also engage with parliament through our secretariat of the Sickle Cell and Thalassemia All Party Parliamentary Group (SCT APPG) to advocate for change in the NHS so that people living with sickle cell can have the quality care they deserve.
We are working with Genomics England to ensure sickle cell researchers will have an accurate and targeted set of data to use as a basis for their work going into the future, to give people living with sickle cell the best outcomes for generations to come.
Finances
Financial Performance Overview
In the last financial year, we were proud to report our fourth consecutive annual surplus, reflecting strong financial management and governance during a challenging financial period for all charities. Despite starting the year with a planned deficit of £59,665, we achieved a surplus of £265,354.
Our sound financial position has supported the continued development of vital services for the sickle cell community. We are incredibly grateful to our leadership team, staff, donors, and volunteers for their dedication, and we look forward to building on this success.
Further financial information can be viewed here.
Equity, diversity and inclusion statement
We are committed to ensuring that all job applicants, members of staff and Board members are treated equally, without discrimination because of gender, sexual orientation, marital or civil partner status, gender reassignment, race, colour, nationality, ethnic or national origin, religion or belief, disability or age.