A recent UK Biobank study by researchers at Exeter University suggests that 1 in 113 people in Northern Ireland have the genetic condition and are pre-disposed to iron overload. The initial symptoms are often vague and hard to classify.

Shockingly, fewer than 5% of people with genetic haemochromatosis (GH) are aware they have the condition – until serious health issues emerge.

Following our community listening road-trip in 2019, this project was developed collaboratively by Haemochromatosis UK and people with GH in Northern Ireland. It supports people affected by genetic haemochromatosis and their families across the five health trust areas by providing and enabling support group meetings (known as 'Iron-Brews') and awareness raising activities accompanying World Haemochromatosis Week.

These support groups meetings offer the first ever opportunity for many haemochromatosis patients to meet people like them and share experiences face to face. Through these groups, we 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 is the source of knowledge and evidence about the scope and impact of the condition on people in Northern Ireland.

With the support of the National Lottery Community Fund, these local support groups :

  • are a source of reliable information and support especially for newly diagnosed patients
  • raise awareness of GH/iron overload among the communities of NI - including local hospitals, surgeries and pharmacies
  • represent the voice of patients with GH in Northern Ireland and
  • provide support and advice to people affected by haemochromatosis, including employers, schools, colleges, families and the wider community in Northern Ireland.

Meet Abigail, one of our youngest community members, talking about her diagnosis of genetic haemochromatosis, aged 15.

We gratefully acknowledge the support of the National Lottery Community Fund in delivering this project.