Frequently Asked Questions About Genetic Haemochromatosis

We have collated many of the frequently asked questions about genetic haemochromatosis with answers here, for ease of reference.

Simply click the button and ask a question!

Frequently Asked Questions

If you have a question that hasn't already been answered, contact one of our helplines.

Latest

Kidszone

Resources for children and young people affected by genetic haemochromatosis. Published March 2021.
Kidszone launches this month

Our new Kidszone launches this month with new resources for children and young people affected by genetic haemochromatosis.
Kids Iron Brew Special for Parents, Grandparents & Guardians - April

This special iron brew is a get-together for parents, grandparents and guardians who have children or young people affected by genetic haemochromatosis.
10,000 steps a day for the Month of March

To raise awareness of this little known genetic disorder and to raise money for Haemochromatosis UK

BBC Radio 4 Charity Appeal in Aid of Haemochromatosis UK

Join Stephen McGann for this BBC Radio 4 Charity Appeal in aid of Haemochromatosis UK. Broadcast on BBC Radio 4 from Sunday 7th February 2021.
Time For Change - Towards Genetic Screening

This 22-page report was commissioned in response to the UK National Screening Committee consultation on genetic screening for GH in adults. Published February 2021.
Liver cancer ten times more likely in men with GH

Men who have the Western world’s most common genetic disorder, haemochromatosis, are ten times more likely to develop liver cancer, according to a major new study.
State of the Nation Report reveals inconsistent NHS care

Over the past 12 months, we have been researching NHS care pathways for people with genetic haemochromatsosis. Help us as we press for urgent change to improve NHS care.
New Genetic Haemochromatosis Resources

We're pleased to announce the publication of three new resources, to help people affected by genetic haemochromatosis.
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.
Genetic counselling service launched

Our free genetic counselling service for members has launched.
Coronavirus Update

Our helpline has received an increased number of queries about coronavirus. We've collated the current advice here. Updated 18th January 2021.
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.
Local social & support groups

Our local socials provide a chance to meet other people affected by genetic haemochromatosis, provide encouragement, share experiences & laughter.