User:The Haemochromatosis Society

The Haemochromatosis Society is a patient organisation that works to raise awareness of Genetic Haemochromatosis and supports patients with haemochromatosis. The Haemochromatosis Society is a charity registered in England and Wales with The Charity Commission, the main regulator of charities in the UK. They are also separately registered as a charity in Scotland with The Office of the Scottish Charity Regulator, commonly known as OSCR. As well as being a charity the society is a Company Limited by guarantee so they are also registered with Companies House.

The charity was founded in 1991 by people affected by genetic haemochromatosis, is run by people affected by genetic haemochromatosis, and exists to provide benefits for people affected by genetic haemochromatosis (GH).

Diagnosis of GH 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.

The charity has worked closely with its counterparts in other countries, notably the Australian Haemochromatosis Society with which it developed The Haemochromatosis Handbook in 2002. It is also a member of Haemochromatosis International (HI), the European Federation of Associations of Patients with Haemochromatosis (EFAPH), the Genetic Alliance and Contact a Family, and is affiliated to the British Liver Trust.

More information is available at http://haemochromatosis.org.uk/