The charity was founded as a patient support organisation, and has since developed into a patient advocacy group and a source of high quality information about genetic haemochromatosis (iron overload). Most of our work falls into four main threads.
We provide Support & Information services to patient and their families. This is absolutely crucial, because there is no other organisation in the UK specifically working for this group. Being diagnosed with a debilitating and potentially even fatal genetic condition brings plenty of questions and worries. We can help, with reliable, trusted information, networks, events and our helplines.
Education for healthcare professionals, patients, families, and others with an interest in genetic haemochromatosis is very important.
More knowledge will lead to quicker diagnosis, diagnosis at an earlier age, more compassionate treatment, and better management of the condition and its symptoms.
Public awareness of haemochromatosis is low. It is a much more common genetic condition than is truly appreciated, across the whole of the UK but particularly in people of Irish descent. We would like genetic haemochromatosis to be as familiar a term as multiple sclerosis or cystic fibrosis. We are working on improving awareness through media work, posters, World Haemochromatosis Week, social media, and more.
The charity has a small budget for research grants, which the trustees can apply after consulting our scientific advisers, to support research in the UK.
The Society works with the scientific community to support research into genetic haemochromatosis, and provides grants to tackle basic scientific, treatment or social issues that affect patients with haemochromatosis.