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…)

Coventry Lord Mayor Draws Haemochromatosis UK Annual Autumn Raffle 2018

On Monday 19 November 2018, the winning tickets of the Fourth Annual Autumn Raffle were drawn by Coventry Lord Mayor John Blundell in his office at the Coventry City Council. With 4,414 tickets in the draw, the Lord Mayor commented on the success of the raffle. The first prize this year went to Mrs Lynda Roskruge who won a brand (Read more…)

The 2019 Great North Run

We have a limited number of Great North Run places and therefore we have set up an application process for this very popular event. Please complete and submit this form by 2nd January to apply for one of our charity places. We will let you know if you have been successful in securing a place by Monday 7th January. If (Read more…)

Bristol Patient Information Day Report

Date: Saturday 17th November 2018 Venue: Aztec Hotel. Aztec W, Almondsbury, Bristol BS32 4TS On Saturday 17 November 2018 Haemochromatosis UK (HUK) held a Patient Information Day (PID) which took place in Brstol, which had just over 50 attendees. PIDs are usually filled with talks featuring medical speakers, updates on the activities of Haemochromatosis UK and are an opportunity to meet and share (Read more…)

Volunteers raise £3000 for Haemochromatosis UK

Media Release 16 Nov 2018 October and November have been busy months for Haemochromatosis UK with the launch of the Iron Overload Report and the recently published BBC article about haemochromatosis. All of this work is only possible because of HUK members and fundraisers. The past few months have also been busy for HUK fundraising volunteers, who have in total (Read more…)

Living With the Impact of Iron Overload: a Summary

Media release 7 November 2018 Feature article by Dr Roseanna Brady. In 2017, Haemochromatosis UK ran an online survey for people with genetic haemochromatosis (GH).  Almost 2,000 people responded.  Because HUK wanted an independent, reliable report from the survey, a research team at the University of Surrey was asked to analyse the responses. The report, LIVING WITH THE IMPACT OF (Read more…)

Report launches at House of Commons on 31 October 2018

Media Release Thursday 1 November 2018 On Wednesday 31 October 2018, Haemochromatosis UK launched successfully the report, “LIVING WITH THE IMPACT OF IRON OVERLOAD: Report from a large survey of people with haemochromatosis” at The House of Commons, Member’s Dining Room. The event was attended by senior clinicians, eminent professors, scientists, senior members of NHS trusts, relevant charities and organisations, (Read more…)

Haemochromatosis UK appoints new trustee

Haemochromatosis UK is very pleased to announce an addition to our board with the appointment of new trustee Mrs Michelle Weerasekera. Michelle was diagnosed with haemochromatosis by chance and was given the details of Haemochromatosis UK by her consultant. She says, “The information provided proved invaluable to both myself and my family in understanding more fully the condition and the (Read more…)