Haemochromatosis UK (HUK) works to raise awareness of genetic haemochromatosis (GH) within families, healthcare professionals and policy makers.
Read more about how we support our patients, raise awareness of GH, educate healthcare professionals and all the other work the charity has done this past year, in our annual report.
We know there are many people in the UK who are affected by GH directly or indirectly, who need information and support, most especially at the time of diagnosis. We are here to help. Our annual report shows how we have done this throughout the last year.
Corrina Towers, Chair of Trustees at HUK stated that, “2018 has been a significant year for us at HUK in many ways. We exceeded not only our financial targets, but also our aspirational ones. Alongside delivering core services such as our trusted Patient Information Days, our helpline and our annual conference, we started to truly advocate for change when we launched the findings of our 2017 large-scale patient survey at the House of Commons. This led directly to a number of exciting initiatives, which could see significant improvements in the quality and consistency of treatment and care of GH patients across the UK.”
David Head, Chief Executive at HUK stated, “in my four years with the charity, it seems to me that 2018 was a pivotal time for the organisation. We have spent much of those four years working to open the “can of worms” that is genetic haemochromatosis. We have known for a long time that our NHS needs to pay more attention and in 2018 we really succeeded in shifting our cause up the national agenda. To continue the analogy, the can is well and truly open.”
Corrina Towers added, “We remain grateful to members who support us, the people who personally fundraise and volunteer for us, and the companies and trusts that commit to fund us. Without their generosity of spirit and time, financial support and commitment to our cause, we would simply be unable to do what we do.”
Haemochromatosis/GH is a genetic disorder causing the body to absorb excessive iron from the diet. Characterised by joint pain and disease, chronic fatigue and weakness, cognitive and psychological difficulties, sexual health issues, skin problems, abnormal liver function, diabetes, and cardiomyopathy. Iron overload can be fatal. It is usually easily treated if diagnosed early.
If you believe you have haemochromatosis or any other condition, please talk to your GP.