Projects

Latest

Scotland's Kiltwalk 2021 Glasgow

The Kiltwalk attracts people of all fitness levels, backgrounds and for a real variety of reasons. Walk for Haemochromatosis UK.
Your NHS Rights

Everyone deserves great NHS care. But if something goes wrong or isn’t working for you, what can you do?
London Marathon 2021 for Haemochromatosis UK

I am unbelievably excited to be running the London Marathon in October 2021 to help raise funds for Haemochromatosis UK. This will be my first marathon, and I am very grateful to Haemochromatosis UK for agreeing to let me run for the charity raising money and awareness of this condition.
Act now to decide who gets access to your medical records

A new scheme starts in September which requires all GPs in England to share patient medical records with NHS Digital. The deadline for opting out is 31st August.

In memory of Lindsay Forsyth

Lindsay was officially diagnosed with Haemochromatosis about 3 years ago, which for people unfamiliar with the genetic condition, is excessively high blood iron levels. Lindsay would attend hospital every two weeks to have some blood removed and this helped to bring down her iron levels over time (though by the time she passed away they were still really high).

Unfortunately high blood iron levels are a big risk factor for other complications, most notably liver disease.
Great North Run half marathon for Dad

In memory of Dad who sadly passed away aged 58 just before Christmas 2019 with liver cancer caused by Haemochromatosis.
Travelers outreach

Our project, in collaboration with Breaking Down Barriers and the Sylvia Adams Charitable Trust, is working with the Irish travelling community to raise awareness of genetic haemochromatosis.
Professional
Advice lines

Our advice lines are available by phone and email. Worried about genetic haemochromatosis? Don't be. Talk to us for friendly, practical help & understanding.
Raising awareness with Endocrinologists

HUK is represented for the first time at the Annual General Conference for Endocrinologists. It will allow strengthening collaborations with other charity organisations and across a global community of Endocrinologists.
HUK Strengthens Role Within Genetic Alliance UK

The members of Genetic Alliance UK voted to appoint Haemochromatosis UK’s Chief Executive, Neil McClements to its board of trustees, earlier this month.
Your Patient Will See You Now

Haemochromatosis UK announce they have received a grant from the National Lottery Community Fund to further develop our “people-powered” clinical awareness raising.
Cutting Edge MRI Technology Used in New Study to Identify Genetic Causes of High Liver Iron

Perspectum Diagnostics have just released study findings that use MRI technology to identify genetic causes of high liver iron.
Finalists for the Better Health Awards

Haemochromatosis UK finalists for the AbbVie Big Ideas for Better Health Awards.

What is genetic haemochromatosis?

Genetic haemochromatosis (GH) is a genetic disorder causing the body to absorb an excessive amount of iron from the diet.
CV19 Vaccine & Haemochromatosis

Advice and information on the new Covid-19 vaccines for people affected by genetic haemochromatosis. Updated 14th June 2021.
Common symptoms
Coronavirus Update

Our helpline has received an increased number of queries about coronavirus. We've collated the current advice here. Updated 28th July 2021.
Employers' guide to haemochromatosis

People with genetic haemochromatosis want to play an active role in society. These guidelines are intended to help employers understand how they can help people with genetic haemochromatosis in the workplace.
Treatment & care
Genetic Testing for Haemochromatosis

Our genetic testing service for haemochromatosis, at a glance. Order a home-testing kit by post, get the results within 2 weeks.
Join us

Together, we are stronger. Join today as a member and receive the many benefits of membership of the UK's only charity for people affected by genetic haemochromatosis.
Clinical Guidelines for Genetic Haemochromatosis

Our charity endorses the national clinical guidelines published by the British Society for Haematology in April 2018, for the treatment of people with genetic haemochromatosis. We strongly encourage patients to ensure that their consultants and venesection teams work to the BSH April 2018 guidelines.
Living well with GH

Changes to your diet cannot prevent iron overload. Check out our guide to healthy eating.