Top national award for charity supporting people with the UK’s most common genetic condition 

Haemochromatosis UK, a small national charity headquarteredin Spalding, Lincolnshire, has won a major national award for its work to improve the diagnosis and care of people affected by haemochromatosis, a genetic condition that causes too much iron in the body.

Following a rigorous selection and assessment process, Haemochromatosis UK (HUK)was chosen from more than 350 charities across the UK as one of the 10 winners of the 2022 GSK IMPACT Awards. Now in their 25th year, the awards are designed to recognise the outstanding work of small and medium-sized charities working to improve people’s health and wellbeing in the UK. This year winners will receive £40,000 in unrestricted funding as well as expert support and leadership development provided by leading health and care charity The King’s Fund.  

Genetic haemochromatosis causes iron overload which can lead to cancer, liver disease, chronic fatigue, diabetes, acute joint pain, sexual health problems and mental health issues. People living with haemochromatosis need lifelong treatment via a process similar to giving blood called ‘venesection’, which keeps their iron levels at a safe level.

Genetic Haemochromatosis is the most common undiagnosed inheritable condition in the UK. One in 150 people are affected and an estimated 1.2 million people are at risk, but fewer than one in 20 people are diagnosed.

The awards judges were impressed with HUK’s efforts to tackle low diagnosis rates. In May last year, the charity launched a brand-new service offering heavily subsidised genetic testing so that families at risk of or living with the condition can be diagnosed much more quickly.

HUK is the only provider of support services for patients affected by genetic haemochromatosis in the UK. As well as offering specialist online resources to help people to manage and live well with the condition, it also runs a popular online support group, Iron Brew, where people can meet others with the condition and share their experiences and advice. Over the past year the charity has supported more than 9,500 people through its Facebook groups and helpline service.

Despite the challenges of the Covid-19 pandemic, HUK has continued to offer a full range of services and been responsive to the changing needs of people with haemochromatosis. During lockdown many patients with genetic haemochromatosis had their venesection appointments cancelled. HUK worked in collaboration with NHS Blood and Transplant to help people with the condition to become blood donors, which has the effect of keeping a patient’s iron at a safe level. The charity managed to secure 800 dedicated blood donation spaces.

The Derry-Londonderry area of Northern Ireland has the highest rate of genetic haemochromatosis in the UK – 1 in 10 people locally are at risk. HUK has worked with communities and local charities in the area to launch an initiative providing free genetic testing for local residents. This has led to medical research which has demonstrated the high level of prevalence of the condition in the North West.

HUK not only supports people affected by genetic haemochromatosis, but also educates frontline health professionals about this little known but prevalent genetic condition. In collaboration with the Royal College of Nursing and Royal College of General Practitioners it produces training materials and courses for nurses and GPs.

Katie Pinnock, Director of UK Charitable Partnerships at GSK, said: ‘Haemochromatosis UK is unique in providing support services to people across the UK affected by this very prevalent but little-known genetic condition. Despite its small size, its innovative genetic testing services and education programmes for health care professionals are helping to drive up diagnosis rates and dramatically changing lives. We were inspired by the way HUK places people with the condition at the centre of everything it does, and how it works to target the communities most affected by haemochromatosis, such as people living in Northern Ireland. We were also struck by the way the charity has responded to the pandemic, influencing at a national level to allow people struggling to access venesection treatment during lockdown to become blood donors.’

The 2022 GSK IMPACT Award recognises Haemochromatosis UK’s significant impact on improving the health and wellbeing of people in communities across the UK who are living with the condition. Developing leaders in the charity sector is a key aim of the GSK IMPACT Awards programme and all winners are invited to build on their success and take part in a tailored leadership development programme run by The King’s Fund. HUK will also be invited to join the GSK IMPACT Awards Network, a UK-wide network of more than 110 previous award winners who work together to develop leaders, find new ways of working and provide mutual support.   

Commenting on the award, Neil McClements, Chief Executive of Haemochromatosis UK, said:  ‘We’re thrilled that Haemochromatosis UK has been recognised with this prestigious award. It’s a testament to the hard work of our small team, in a year which has been particularly challenging due to the Covid-19 pandemic. We’d like to thank the awards judges, GSK and The King’s Fund for recognising our innovative approach to serving the genetic haemochromatosis community, particularly our genetic screening service, peer support groups and our collaborations with the NHS. We look forward to building on this accolade in the coming months.’

For more information on Haemochromatosis UK, visit: www.haemochromatosis.org.uk