Haemochromatosis UK is the the voice of the genetic haemochromatosis community. Last year, their 4 FTE staff supported over 152,000 people affected by iron overload (genetic haemochromatosis - GH), initiated medical research to advance the care of people affected and trained over 500 NHS clinicians with free workshops, presentations and online eLearning resources (accredited by the Royal College of Nursing and Royal College of GPs).
The charity launched a popular genetic testing and screening programme in 2021, which helps hundreds of families every month understand their personal genetic risks of iron overload. This service is supported by specialist Advance Nurse Practitioner appointments by phone/Zoom to provide the specialist expertise to patients affected by this under-diagnosed by remarkably common condition. The charity has leveraged digital tools extensively to support such a large, geographically dispersed community. This has included online peer support groups for over 9,000 people and advanced machine learning research to identify people at risk from existing medical datasets at scale.