Haemochromatosis UK is a patient organisation that was founded in 1991 by people affected by genetic haemochromatosis and is still run by patients. More formally, we are The Haemochromatosis Society, and Haemochromatosis UK is our working, public facing name. We are here to support people affected by genetic haemochromatosis (GH).
GH is not as rare as is often implied, and we know there are many people in the UK who are affected directly or indirectly, who need information and support, most especially at the time of diagnosis. There is a lot of information and misinformation available, and sorting it all out at a time of personal stress is often quite difficult. We are here to help.
Diagnosis of GH, unfortunately, is often made later than ideal, perhaps at a stage where iron overload has started to cause severe symptoms or serious damage to the organs of the body. Relatively simple blood tests, genetic tests, and recognition by healthcare professionals of patterns of symptoms, should lead to diagnosis sooner than it often does. The charity works to raise awareness of GH with families, healthcare professionals and policy makers, in an effort to address this problem.
THS also has a small research budget, which is applied by the trustees to support investigations into the condition. This might be social research, medical research, or investigations into clinical practice.
The charity has worked closely with its counterparts in other countries; it is a member of Haemochromatosis International (HI), the European Federation of Associations of Patients with Haemochromatosis (EFAPH) , the Genetic Alliance UK and Contact a Family, and is affiliated to the British Liver Trust.