Haemochromatosis UK has secured five years of funding for a major new programme across England, to develop and roll-out family screening for the condition.

This new programme is being funded by The National Lottery Community Fund, which distributes money raised by National Lottery players for good causes and is the largest community funder in the UK. The award, which runs over five years, will enable us  to advise and support communities at risk of iron overload from genetic haemochromatosis (GH) throughout England.

The initiative builds upon the charity’s successful launch of postal genetic screening in 2021 and associated research programme, which demonstrated that genetic haemochromatosis is more prevalent than was previously thought.

With the National Lottery’s support, the charity will provide advice and support to patients and clinicians across England, and deliver screening for the condition to families at risk. The charity’s specialist nursing team will provide counselling for those newly diagnosed with genetic haemochromatosis. Genetic screening will be provided to families at risk across England, through the charity’s award-winning genetic testing service.

Commenting on the charity’s award, Alexander Jones, Funding Officer for The National Lottery Fund, said "The Fund believes Haemochromatosis UK is well-positioned to begin this exciting new programme. We were impressed by HUK’s strong commitment to giving their beneficiaries a voice in the development and delivery of services, and feel this project could have major, lasting impact for these individuals, as well as raising overall awareness of Genetic Haemochromatosis." 

The charity has drawn heavily on the lived experience of families living with the condition in drawing up the programme of work. Richard, aged 65, said : “When you get your diagnosis you have so many questions that your GP can’t always answer. The people at the charity we all spoke to were extremely helpful and knowledgeable. It’s also helped us to be able to inform our wider family about their options to try and help them avoid the problems I had.” 

Spalding MP and campaigner for haemochromatosis sufferers, the Rt Hon Sir John Hayes CBE MP said “This is great news for all those with this condition and great news for Spalding too. I have come to know the charity well and the excellent work they do through my role as Chairman of the All Party Parliamentary Group on Haemochromatosis and they will continue to enjoy my full and dedicated support”.