Founded in 1990 by Janet Fernau MBE, Haemochromatosis UK is a small national charity that provides information and advice to families affected by genetic haemochromatosis (GH). Untreated, the condition can lead to iron overload, where the body is unable to process excess iron. Excess iron is extremely toxic. It can cause a wide range of physical and mental ill-health, including; liver disease, cancer, heart disease, chronic fatigue, diabetes, severe joint pain, sexual health issues and neurological issues.
Haemochromatosis UK provides telephone and email helplines, staffed by specialist nurses, to provide advice and reassurance to people when they are at their most vulnerable and afraid. They also have a Buddying scheme to link newly diagnosed people to volunteers with lived experience. Recent work includes pioneering and award-winning community screening programmes in disadvantaged communities across the UK.
The charity runs a successful clinician education programme, to help our hard-working NHS with training in best practice care – and how to diagnose the condition promptly. Early diagnosis saves lives, but the initial symptoms can be vague and hard to spot.
Thanks to the Shears Foundation, Haemochromatosis UK has developed award-winning education resources, to help healthcare practitioners deliver top-notch care to people affected. These training materials are accredited by the Royal College of GPs and Royal College of Nursing. They have won national awards including the King's Fund GSK Impact Award in 2022, The National Patient Safety Learning Award and AbbVie Better Health Award. In Spring 2021, Haemochromatosis UK’s team secured the prestigious Nurse of the Year Award, the first time this has been presented to a voluntary sector organisation.
