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What is Haemochromatosis International?

We are a global alliance of haemochromatosis associations, established to advance the health of people with haemochromatosis in any part of the world. 

We welcome membership from any haemochromatosis association, national or otherwise.

What are our priorities?

  1. To improve awareness of haemochromatosis throughout the world
  2. The geographical expansion of the alliance
  3. To develop and disseminate internationally recognised guidelines for the treatment of haemochromatosis

What is haemochromatosis?

On this site you will find general information about haemochromatosis (hemochromatosis), links to support organisations around the world and information about the services that they provide.

You can find answers to general questions about haemochromatosis by downloading and reading our recently published e booklet now available in English, Portuguese and Hungarian.

Where can you find support in your country?

If you are seeking specific information about haemochromatosis support in a particular location click the link to Member Organisations and find the organisation that serves your country.

Research and publications on the treatment of haemochromatosis

Therapeutic Recommendations in HFE hemochromatosis

In March 2018, Haemochromatosis International’s “Therapeutic recommendations in HFE hemochromatosis for p.Cys282Tyr (C282Y/C282Y) homozygous genotype” was published in the journal Hepatology International with free public access. The publication can be downloaded free.

Click here: https://doi.org/10.1007/s12072-018-9855-0

The Therapeutic Guidelines have now been translated in multiple languages. Click here for translations.

Haemochromatosis Arthropathy

The EULAR 2025 classification criteria for haemochromatosis arthropathy have now been published.

Congratulations to Professor Patrick Kiely and all involved in the task force – Stephanie Finzel,
Graeme Carroll, Geraldine McCarthy, John Stack, Simone Parisi, Graca Porto, Pascal Richette, Gyorgy Nagy, Marton Weidl, Ann Rosenthal, Pascal Guggenbuhl, Katarzyna Banaszkiewicz, Svenja Engelhardt, Jeremy Shearman, DavidMitchell, Jane Barker, Valerie Brueton, Barbara Butzeck, Philip Coathup,
Howard Don, Jacqueline Dowsett, Marie Duncan, Tracey Dunleavy,Ian Fish, Allin Hoggarth, Mark McKinnon, James Minter,Tim Osborne, Marguerite Smith, Christine Wright, Pedro M. Machado.

Special thanks to Howard Don, past president of Haemochromatosis International and Dr Barbara Butzeck, President of EFAPH for their involvement representing patients on this project. You can read the paper published in the Annals of the Rheumatic Diseases here.

 

The Haemochromatosis Arthropathy Research Initiative was launched at the EFAPH AGM in 2015 in Cologne. The group is composed of seven rheumatologists from UK, France, Germany, Austria, Canada and Australia as well as Barbara Butzeck from EFAPH as patient representative.

HARI is committed to improve the care of patients with haemochromatosis arthropathy.  HARI aims to do this via patient and doctor education, research into disease mechanisms, clinical documentation, and translation of better understanding from all of these endeavours into better care.

Since it began the group has published advice for patients, general practitioners and orthopaedic surgeons about the patterns and bone lesions evident in Haemochromatosis Arthropathy and its treatment.

The document “Treatment of Haemochromatosis Arthopathy – Advice for patients about treatment of haemochromatosis arthropathy” is now available in several languages: Danish, English, French, German and Portuguese and can be downloaded below.

World Haemochromatosis Week

World Haemochromatosis Week is held every year in the first week of June. The aim of this week is to raise awareness of haemochromatosis around the world.  Learn More

Supporters

Haemochromatosis International gratefully acknowledges past support of Novartis, DRG Germany, and DRG USA with the start-up of this Charitable Incorporated Organisation, and Resonance Imaging towards administrative costs.  We welcome financial sponsorship to help us continue.

Please contact us at info@haemochromatosis-international.org for more information.