On 13 June 2023, in a packed Committee Room at Stormont, Neil Irwin spotlighted the issue of Haemochromatosis to the Northern Ireland Assembly All Party Group on Rare Diseases. Haemochromatosis UK had been invited by the Northern Ireland Rare Diseases Partnership (NIRDP).

All the major parties in Stormont were represented as Neil used the platform to inform elected representatives and Department of Health officials about long-standing and recent concerns with prevalence, diagnosis and treatment.

Of those present many now knew of the condition, some had genetic haemochromatosis (GH) and another had previously worked as a venesection nurse. It was explained that although GH was considered rare in terms of health care resources - Type 1 GH was not, in fact, rare. Neil shared early results from the charity's local community screening in Belfast and Newry that adds to the growing weight of evidence that people in Northern Ireland have a 1 in 10 risk of iron overload. 

The issue of accessing blood donation services and consultant appointments was also highlighted. Members of the All Party Group were very interested in how more Haemochromatosis patients could give blood through NI Blood and Transfusion Service. The Group also discussed how the condition might be impacting on other conditions such a diabetes in Northern Ireland.

Haemochromatosis were warmly thanked for presenting at the meeting and a number of specific actions to progress were minuted by the NIRDP.