GP Training Webinars Launched

Genetic haemochromatosis is the UK’s most common – yet under-diagnosed – genetic condition. A typical GP practice will have an average of 15 people affected by haemochromatosis on its list, possibly undiagnosed. Working in partnership with the Royal College of GPs, Haemochromatosis UK (HUK) has developed training resources & an eLearning module covering genetic haemochromatosis. To mark the launch of the Royal College of (Read more…)

Genetic Haemochromatosis Education Programme Launches

The Genetic Haemochromatosis Education Programme (GHEP) is a three year programme that aims to educate healthcare professionals about genetic haemochromatosis. It has been in the works for the past year, and due to funding from The Iron Games and The Shears Trust, it has recently been launched. The first step for Haemochromatosis UK (HUK) was hiring a GHEP Manager, who (Read more…)

Westminster Hall Debate on Genetic Haemochromatosis

HUK was delighted to see iron overload (genetic haemochromatosis) debated in parliament yesterday (03 July 2019) for a full hour, in the presence of health minister Mrs Seema Kennedy MP and led by Mark Pawsey MP, Chair of the All Party Parliamentary Group on Genetic Haemochromatosis. The debate was wide ranging, with MPs touching on symptoms, prevalence, penetrance, and on (Read more…)

Haemochromatosis to be debated at Westminster

Chair of the All Party Parliamentary Group for Genetic Haemochromatosis (APPGGH) Mark Pawsey MP has secured a one-hour Westminster Hall debate in parliament next week, in which he will raise issues around diagnosis and management of the condition. Other MPs will also be able to speak on the subject, which is relevant to all MPs because the prevalence of genetic (Read more…)

The Iron Games: Soccer Report

  The second round of The Iron Games saw 10 teams – nine of which were from Irish construction firms and one representing the charity Haemochromatosis UK (HUK) – compete for the Iron Cup in soccer. The 7-a-side tournament took place at Allianz Park (Saracens) in London on a beautiful summery evening. Once again there was plenty of passion on (Read more…)

Why Being a Haemochromatosis Patient Can Save Lives

The treatment for genetic haemochromatosis is a regular blood removal process called venesection. Whilst this may sound scary, it is the same process as a regular blood donation, except the blood is discarded. When patients find out that their blood is being discarded, the question that arises is – “I wish I could donate”. Donating blood is often something that (Read more…)

World Haemochromatosis Week 2019

03-09 June was World Haemochromatosis Week (WHW) and so many of you got involved with awareness raising activities. This year’s campaign was focused on #TellTen, trying to get all patients, members and supporters to #TellTen other people about haemochromatosis. We’re were very pleased to see so many people talking about haemochromatosis. We saw this clearly on social media was where (Read more…)

Haemochromatosis UK Announces New Chief Executive

Earlier this year Haemochromatosis UK (HUK) announced plans to expand the senior management team at the charity by appointing a new Chief Executive and creating an Operations Executive role to be taken up by David Head, the existing Chief Executive. The trustees are delighted to confirm that this has been progressed exactly as planned and the selection process completed. (Read more…)

The Iron Games Returns for 2019. Gaelic Football Report

On Saturday 8 June, The Iron Games returned for 2019. The Iron Games are a four-part sporting tournament which see construction firms in the UK take part to raise awareness of iron overload, which is common among those of Irish descent. The games raise money for a 3 year Genetic Haemochromatosis Education programme, and have already brought in almost £200,000.  The (Read more…)