Haemochromatosis is prevalent in Northern Ireland. Recent UK Biobank studies suggest that as many as 1 in 113 people are affected by genetic haemochromatosis. It is common in people from Celtic backgrounds, particularly of Irish understood ancestry (1 in 5 people carry the gene). Patients with GH or Iron Overload are found all across Northern Ireland.

The project has been developed by Haemochromatosis UK in partnership with local members of the GH community in Northern Ireland. It’s designed to empower us patients and enable us to actively promote awareness of this very common but hardly known condition in Norther Ireland and help us as a local support group give support, information and awareness to people diagnosed with GH and their families.

Early diagnosis saves lives. Every diagnosis starts with awareness within the community. We particularly want to reach beyond Belfast into the South, West and North West of Northern Ireland. This project will support patients and families across the five Northern Irish health trust areas by providing and enabling support group meetings (known as ‘Iron-Brews’) and awareness raising activities accompanying World Haemochromatosis Week in 2020.

Thanks to this National Lottery funding, the support groups meeting will offer the first ever opportunity for hemochromatosis patients to meet people like them and share experiences face to face. The project will give voice to people living with haemochromatosis in NI (and their families) so that we can proactively support UK-wide efforts of HUK to improve diagnosis and treatment.

With this funding we will collaborate with Health Trust Clinical Leads and care specialists and reach out to local and national community representatives, across the entire community. Volunteer patients have already started raising awareness with community representatives and engaging with health professionals, for whom this is a poorly understood, yet prevalent, condition.

We want to organise more Iron-Brews and enable even more patient led input into the improvements of care for the long-term debilitating condition. In addition to peer-to peer support meetings, the group will be involved in setting up a range of awareness activities within the communities of NI, during community events, in local hospitals, GP surgeries and pharmacies.

The group will also develop and publish fact files to reflect the specific context of diagnosis and treatment in NI. These would be particularly valuable for any newly diagnosed patients who need good information to manage their condition. We want to help people quickly identify evidence-based, clinically effective advice as they seek to live with the condition and its debilitating effects. As the voice of patients in Northern Ireland, the group will be the source of knowledge and evidence about the scope and impact of the condition on people in Northern Ireland.

Get involved! If you’d like more details about the HUK Northern Ireland Support Group, email [email protected] for further details.