Our vision is a world free from aplastic anaemia and other rare bone marrow failures.
Few people know about aplastic anaemia and associated diseases, even though they are as common as some types of leukaemia and just as devastating.
Aplastic anaemia(AA) is a rare illness of the immune system, whereby it attacks the bone marrow, destroying the stem cells and halting the production of all blood cells - red, white blood cells and platelets. This affects people’s ability to function – they may bleed simultaneously, bruise, attract life-threatening infections and are haunted by extreme fatigue. If untreated, people die quickly.
Aplastic anaemia (AA) will affect around 100-150 people annually in England, making it an extremely rare disease. It can affect anyone of any age and gender, but it peaks in the most vulnerable – 0-22-year-olds and the elderly (60+). Between 30-40 children will be diagnosed with aplastic anaemia in England every year.
With no government funding, we have survived and thrived thanks largely to individual donations and community fundraising. We exist because no-one is immune to bone marrow failure – it can strike anyone, at any time, of any gender, ethnicity or walk of life.We care because the understanding of aplastic anaemia and its causes across our local communities is limited as is routine genetic testing, which may unfortunately lead to incorrect diagnoses and therefore treatment.
Under the leadership of a new CEO the organisation has undergone a significant transformation and is implementing an ambitious strategy of development and growth, so that more families can be supported, and ultimately a cure – found.
•We’re THE only charity in the UK focused on rare bone marrow failures at national scale
•We are passionate and ambitious about patient support and research
•We are an enabler and make sure the patient’s voice is heard
•We’re a bridge between rare bone marrow failure experts in the UK and the patient community.