8 Oct 2026
Belfast has been chosen to host Haemochromatosis UK’s patient and expert conference.
Reflecting the high prevalence across the whole of Ireland of the inherited condition commonly known as the ‘Celtic curse’.
The charity’s ‘We Are Family’ event took place at the Titanic Hotel today (7 October), bringing together patients, families, healthcare professionals and leading researchers. Around 65 people attended, with Northern Ireland’s Health Minister addressing the event.
Genetic haemochromatosis causes the body to absorb too much iron from food. Without diagnosis and treatment, excess iron can accumulate in organs and tissues, potentially causing chronic fatigue, joint damage and liver disease. Research published in 2026 estimated that approximately one in 71 people in Northern Ireland have the principal high-risk genetic profile associated with the condition, although not everyone with these genetics develops iron overload.
Early diagnosis allows excess iron to be removed through regular blood withdrawal, known as venesection, before irreversible damage occurs. Economic modelling commissioned by Haemochromatosis UK estimated that screening could generate savings of up to £95 million over 40 years in Northern Ireland, with screening people in their forties identified as the most cost-effective approach.
The choice of Belfast for its annual conference also reflects the charity’s expanding work locally, including community screening, public awareness campaigns and research into the health and economic benefits of earlier detection.
The conference brought this work together, giving people affected by haemochromatosis the opportunity to hear about developments in care, ask questions and share their experiences with those researching and treating the condition.
Jonathan Jelley MBE JP, CEO at Haemochromatosis UK, said: “Belfast is an important setting for this event, both because of the prevalence of the genetics associated with haemochromatosis across the island and the progress being made here in screening, awareness and research.”
“We want patients and families to be part of that conversation. This is an opportunity to meet the experts, understand the support available and help shape how we identify and care for people affected by iron overload.”
Speakers included Dr Shane McKee, who presented on the Northern Ireland Regional Genetics Service, and Dr Johnny Cash of Belfast Health and Social Care Trust, who explored the development of local treatment services.
The programme also included a session from the Northern Ireland Blood Transfusion Service on the potential for eligible patients receiving venesection to become blood donors, alongside research into long-term health led by a University of Exeter team including Janice Atkins and Luke Pilling.
The event featured morning talks on screening, genetics and treatment, followed by afternoon discussions on long-term health, conversations with specialist nurses and a patient and researcher forum.
Founded in 1990, Haemochromatosis UK is a patient-led charity supporting people affected by genetic haemochromatosis through support, education, awareness and research. Its work includes genetic testing, specialist nursing advice and family support, alongside campaigning for earlier diagnosis and improved care.
