About

We are Haemochromatosis International

Haemochromatosis International is a global alliance of patient organisations, support groups and members of the scientific and medical communities. Our mission is to improve the lives of people with haemochromatosis, wherever they are in the world.

How we work

As a UK-registered charity, Haemochromatosis International is governed by a Board of Trustees. In addition, our work is guided by a scientific advisory committee made up of eminent researchers and clinicians from around the world. Their expertise spans diverse areas from basic sciences, laboratory medicine and several medical specialities, to health economics and patient advocacy.

A collaborative approach

A core part of our work is fostering and maintaining the relationship between the scientific community and our member organisations, creating the conditions for meaningful, ongoing collaboration that benefits people living with haemochromatosis. 

Nowhere is this more visible than World Haemochromatosis Week (WHW), our flagship annual awareness event that brings together patient organisations, clinicians and researchers from across the globe and which serves as a focal point for awareness, advocacy and shared learning.

Outside of WHW, members of our scientific committee regularly participate in patient association meetings and conferences, while patients contribute to the work of BioIron and the European Iron Club, two leading bodies dedicated to advancing our understanding of iron biology and its role in health and disease.

This collaboration has produced tangible results. Patient-oriented initiatives include the publication and translation of the Therapeutic Guidelines and the ongoing HARI project, which is investigating haemochromatosis arthropathy. Patients have also played a meaningful role in shaping key clinical publications, including the EMQN best-practice guidelines for molecular diagnosis, the EASL clinical practice guidelines for HFE haemochromatosis, and the updating of haemochromatosis nomenclature and classification.

Learn more about the history and achievements of Haemochromatosis International.

Board members

Joint Scientific Committee (jointly operated with EFAPH)

Haemochromatosis International and the European Federation of Associations of Patients with Haemochromatosis are guided by a joint scientific advisory committee made up of eminent researchers and clinicians from around the world. 

Other members of the committee are:

Title	Name	Country	Main expertise
Prof	Paul Adams	Canada	Hepatology
Dr	Barbara Butzeck	Germany	Patients’ rep (EFAPH)
Dr	Barbara de Graff	Australia	Health Economics
Prof	Martin Delatycki	Australia	Clinical Genetics
Dr	Sonia Distant	Norway	Hepatology
Mr	Howard Don	UK	Patients’ representative(HI)
Prof	Rob Evans	UK	Biochemistry Research
Dr	Stephanie Finzel	Germany	Rheumatology
Prof	Domenico Girelli	Italy	Internal medicine/Hematology
Prof	Pascal Guggenbuhl	France	Rheumatology
Dr	Jidong Jia	China	Hepatology
Dr	Kris Kowdley	US	Hepatology
Dr	Olivier Loreal	France	Biology Research
Prof	Gordon McLaren	US	Hematology
Prof	John Olynyk	Australia	Hepatology
Prof	Antonello Pietrangelo	Italy	Internal medicine/Hepatology
Prof	Graça Porto	Portugal	Hematology
Dr	John Ryan	Ireland	Hepatology
Dr	Mayka Sanchez	Spain	Molecular medicine
Prof	Paulo Santos	Brazil	Clinical & molecular pathology
Dr	Jeremy Shearman	UK	Hepatology
Prof	Nathan Subramaniam	Australia	Molecular medicine
Prof	Dorine Swinkels	Netherlands	Clinical & molecular pathology
Mr	Ketil Toska	Norway	Patients’ rep (EFAPH)
Prof	Heinz Zoller	Austria	Hepatology