Our latest report reveals the true costs to the NHS of the burden of ill-health arising from genetic haemochromatosis, including key conditions such as liver disease, cancer, diabetes, and joint pain arising from the condition.

This initiative represents the culmination of a year's work by researchers at York Health Economics Consultancy, our team, members of the charity's Clinical Advisory Panel and University of Exeter Medical School.

These reports are available in hardcopy at public libraries and from our online shop.

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From the foreword : 

Genetic haemochromatosis isn’t rare – it’s rarely diagnosed.

We know from earlier studies that genetic haemochromatosis can cause chronic ill-health. But to what extent, compared to people without the condition? What are the cost implications for the UK healthcare system arising from the condition?

Through this work, we hope to inform policymakers, clinicians, researchers and people affected by the condition of the financial consequences of clinical and policy choices relating to the condition. We also anticipate that this new study will prompt further consideration of the benefits of cascade and population screening in communities at risk across the UK.

We’d like to thank the many members of our own community who shared their own experiences of the personal cost of GH-induced illness. These are the people behind the numbers, the people that matter the most.

Neil McClements

Chief Executive, Haemochromatosis UK

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From the foreword : 

We are pleased to share this new research which evaluates the financial cost of illness caused by genetic haemochromatosis in the UK.

It illustrates the previously hidden economic consequences for the NHS in caring for illness caused by the condition. It also underlines the profound impact that late or undiagnosed genetic haemochromatosis has on families affected.

We hope that this carefully researched and robustly analysis by the team at York Health Economics Consortium helps policy makers and clinicians to refine an improve the diagnosis and care pathways for the estimated 9 million people at risk of genetic haemochromatosis.

Katy Burns MBE

Chair of Trustees, Haemochromatosis UK