Welcome to the website of Haemochromatosis International, 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. Our priorities are:
- To improve awareness of haemochromatosis throughout the world
- The geographical expansion of the alliance
- To develop and disseminate internationally recognised guidelines for the treatment of 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. If you are seeking specific information about haemochromatosis (genetic haemochromatosis – GH / hereditary haemochromatosis – HH) in a particular location you should follow the link to an organisation that serves your country.
Click on About Us to find out more.
Research and publications on the treatment of haemochromatosis
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.
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.
- Danish Behandling af Hæmokromatose Artropati
- English Treatment of Haemochromatosis Arthropathy
- French Traitement du rhumatisme hémochromatosique
- German Behandlung der Hämochromatose-Arthropathie
- Portuguese Tratamento da Artropatia da Hemocromatose
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.
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.