Haemochromatosis UK attends British Society for Haematology Conference 2019

Last week, Haemochromatosis UK (HUK) Trustee Lisa Flude and wonderful volunteer Zara Woods represented the HUK stand at the British Society for Haematology (BSH) Conference in Glasgow. The conference was attended by hundreds of haematologists, nurses and students. Lisa and Zara were able to speak to attendees about haemochromatosis (GH) and specifically about the BSH Clinical Guidelines. The BSH Conference (Read more…)

Haemochromatosis UK announces Senior Staff Change

Haemochromatosis UK (HUK) has announced to its members that there will be a senior staff change at the organisation. The charity will be appointing a new Chief Executive in the coming months, with existing Chief Executive David Head moving to an Operations Executive role. David writes a letter to all members and supporters of HUK, commenting on this announcement. — (Read more…)

Haemochromatosis UK takes a look at the world of Clinical Trials

As a charity and patient organisation, Haemochromatosis UK (HUK) is interested in new research about haemochromatosis. As this is increasingly a priority for HUK as well as our members, HUK wants to make sure that we are always up to date on all of the key information about haemochromatosis and respond to new medical research. Clinical trials for new treatments (Read more…)

Newcastle Patient Information Day Report

Haemochromatosis UK’s (HUK) latest patient information day on Saturday 16 February 2019. Patient information days (PIDs) are a way for genetic haemochromatosis (GH) patients to speak to each other about the condition but also to learn from healthcare and medical professionals. The first speaker, Dr Steven Masson, a Consultant Hepatologist from The Freeman Hospital in Newcastle, gave an easy to (Read more…)

“We really need to be world leaders” in diagnosing haemochromatosis

Over the past month it has been great to see the publicity that GH has been receiving in the media. The BBC Radio 4 Inside Health piece on Tuesday 12 Feb 2019 was brilliant, and HUK thanks Dr Mark Porter for doing a great story on genetic haemochromatosis (GH). There were some really interesting insights made by both Professor David (Read more…)

Haemochromatosis UK becomes Charity of the Year

Haemochromatosis UK has been chosen as the charity of the year for Rowlinsons Solicitors. Jonathan Gandy, a representative from Rowlinsons, spoke about choosing Haemochromatosis UK as their Charity of the Year, and commented: “When choosing a Charity of the Year contender we were looking for an organisation that not just staff but the community could also get behind. We researched (Read more…)

Iron Overload MP Group is Created to Tackle Problems Caused by Haemochromatosis

Press Release A new All Party Parliamentary Group (APPG) for genetic haemochromatosis has been created and met for the first time last week in Westminster. Working with Haemochromatosis UK, a charity and patient organisation, the APPG will tackle issues around the diagnosis and treatment of people suffering from the condition, which causes iron levels in the body to accumulate to (Read more…)

Haemochromatosis Hits the News

Two major studies have confirmed that the iron overload condition haemochromatosis, previously thought to be a low-level health risk – although Haemochromatosis UK has stated its significance in the recently released Iron Overload Report –  actually quadruples the risk of liver disease and doubles the risk of arthritis, and frailty in older age groups. It also causes higher risk of diabetes and chronic pain. The studies in UK Biobank data found that the number of deaths from liver cancer in men with the faulty genes was significantly higher than expected, although the number of deaths was small. (Read more…)

Haemochromatosis Heroes

Haemochromatosis Heroes  Calling all every day heroes… In January 2019 Haemochromatosis UK (HUK) launched Haemochromatosis Heroes, get involved  and make your #HeroPledge. All wishing to take part will be able to set their own challenges, and pledge to HUK what they want to achieve. This could be as simple or as tough as you wish. You can make a pledge (Read more…)