In 2017, our charity conducted the world's largest survey of people affected by genetic haemochromatosis. Whilst our knowledge of the biological mechanisms at work in genetic haemochromatosis continues to develop, little research is published on the impact of the condition on people’s lives. 

This report is the result of an independent expert analysis of the 2017 survey responses. It highlights the wide array of symptoms experienced by people with haemochromatosis.  Our report provides support for its effectiveness in reducing some of the symptoms although for some patients, treatment is a difficult and unpleasant experience.

Download our report

At HUK, our aims are to support those with haemochromatosis and those at risk, to educate patients, families, the wider public and healthcare community about the condition in order to raise awareness of haemochromatosis, and to stimulate research into the condition and its impact on people’s lives. We hope that this report will contribute to all of these aims and, in particular, that it will encourage earlier diagnosis and stimulate much needed new research.

From the foreword, by Dr Edward (Ted) Fitzsimons, Consultant Haematologist and Honorary Associate Clinical Professor, University of Glasgow :

Haemochromatosis UK gives voice to those patients who have been diagnosed, and campaigns vigorously on behalf of the vast but silent majority of undiagnosed patients. It is without doubt ‘the most common condition you have never heard of.’