The growth and achievements of Haemochromatosis International (HI) are a testament to the committed patient advocates and clinicians who have worked tirelessly since its establishment to support and advocate for individuals with haemochromatosis, and their families, all over the world.
2005
The European Federation of Associations of Patients with Haemochromatosis (EFAPH) was founded in Rennes, France, by Jean Rialland and Pierre Brissot, with founding member associations from France, Belgium and Spain.
2011
The idea of creating a worldwide alliance of haemochromatosis associations first arose during the Fourth Congress of the International BioIron Society, which was held in Vancouver, Canada, in 2011.
2013
The International Alliance of Haemochromatosis Associations (IAHA) is established
At the Fifth Congress of the International BioIron Society, held in London, the IAHA was established, bringing together representatives from Europe, Canada, Australia, Brazil and South Africa. The founding organisations of the IAHA were:
- European Federation of Associations of Patients with Haemochromatosis (EFAPH)
- South American Haemochromatosis Association – Brazil
- Canadian Hemochromatosis Society
- Haemochromatosis Australia
2016
Haemochromatosis International achieves charitable status
In 2016, IAHA was formally registered in the United Kingdom as a Charitable Incorporated Organisation, under the name Haemochromatosis International (HI). Today, HI serves as a global alliance of patient organisations working together to improve patient experience through early diagnosis and timely treatment. Current member organisations include associations from Australia, Brazil, Canada, Denmark, France, Germany, Hungary, Ireland, Italy, New Zealand, Norway, Portugal, Spain, the United Kingdom and the United States.
A new era of research begins
The Haemochromatosis Arthropathy Research Initiative (HARI) was established with a commitment to improving the care of patients with haemochromatosis arthropathy.
2018
Haemochromatosis International publishes new therapeutic guidelines
As a result of the HARI project, HI published Treatment of Haemochromatosis Arthropathy – Advice for patients about treatment of haemochromatosis in three languages.
HI also published Therapeutic recommendations in HFE haemochromatosis for p.Cys282Tyr (C282Y/C282Y) homozygous genotype in Hepatology International.
2019
The Joint Scientific Committee is established
At the Eighth Congress of the International BioIron Society, held in Heidelberg, Germany, a new joint scientific committee was formed, integrating the previously separate EFAPH and HI committees.
2022
Celebrating the women who have contributed to our mission
Iron Women of the World was a HI tribute to the many women in the scientific and advocacy communities whose work has helped to improve the lives of people affected by haemochromatosis.
2023
Putting patients at the heart of research
After conducting a survey of nearly 1,500 haemochromatosis patients, HI published Haemochromatosis patients’ research priorities: Towards an improved quality of life in Health Expectations: An International Journal of Public Participation in Health Care and Health Policy.
2025
Raising awareness, empowering patients
The publication of Our Answers to Your Questions in multiple languages provided a go-to source of information for patients and their families.
HI held its first patients-and-experts conference in the UK, providing a valuable opportunity for those living with haemochromatosis to talk directly with members of the scientific community.
In partnership with EFAPH, HI conducted a survey using Häder’s Type 4 Delphi Technique to establish a consensus opinion on population screening for haemochromatosis. The results, published in 2025, will help form the basis for policy development and advocacy strategies around the world.