GH to the Future

Saturday 13th April, Haemochromatosis UK (HUK) held their Annual Patients Conference in the city of Coventry. This year, HUK also organised a pre-conference dinner, which was hosted by the Lord Mayor of Coventry and haemochromatosis patient, Cllr John Blundell. As well as an amazing meal and evening entertainment, the dinner offered attendees the chance to speak to other haemochromatosis patients, (Read more…)

HUK Annual Report and Accounts Published

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. (Read more…)

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…)