Haemochromatosis

About the Working Group

The Haemochromatosis and Rare Hepatic Iron-Loading Diseases Working Group brings together adult and paediatric hepatologists, researchers, junior professionals and patient representatives with expertise in hereditary haemochromatosis and other rare disorders associated with abnormal iron accumulation.

Haemochromatosis is a group of inherited disorders in which excessive iron absorption leads to progressive iron accumulation in the liver and other organs. If untreated, iron overload can cause liver fibrosis, cirrhosis and complications affecting the heart, pancreas, joints, endocrine system and other organs.

The Working Group also considers rarer hepatic iron-loading diseases, including non-HFE haemochromatosis and other inherited disorders of iron regulation and metabolism.

The group aims to improve diagnosis, disease classification, non-invasive assessment, patient information, registry development, education and collaboration across Europe.

Get Involved

Clinicians, researchers, paediatric specialists, geneticists, radiologists, haematologists, patient representatives and patient organisations interested in haemochromatosis and rare hepatic iron-loading diseases are welcome to become involved in the Working Group.

The group works on registry development, patient and clinician information, non-invasive assessment, education and collaboration to improve diagnosis and care across Europe.

For more information or to join the Working Group, please contact the ERN RARE-LIVER Coordination Office.

Working Group interest form:
https://ec.europa.eu/eusurvey/runner/ERN_LIVER_WorkingGroups