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  • Newly diagnosed?
  1. Get help
  2. Newly diagnosed?

Newly diagnosed?

Are you or a family member newly diagnosed with genetic haemochromatosis? We are here to help.

Become a member

We provide support & advice to people with genetic haemochromatosis in the UK. We aim to support our members to manage their condition and to promote better medical understanding of the condition, working in co-operation with leading clinicians.

By joining as a member, you get access to a range of additional resources and support for your condition. You'll also be joining a vibrant, supportive, engaged community of people affected by genetic haemochromatosis. Together, we're stronger.

Join Us

Learn about the common variants of genetic haemochromatosis

Genetic haemochromatosis comes in several variants, depending upon genetic mutation. Each has its own characteristics.

The most prevalent variant in the UK is HFE (also known as type 1) genetic haemochromatosis, which has several types :

  • C282y homozygous
  • Compound heterozygous (c282y/h63d)
  • H63d homozygous
  • C282y carrier
  • H63d carrier

There are also less prevalent variants of genetic haemochromatosis. These are caused by changes to genes other than the HFE gene (type 1) :

  • Type 2 (juvenile) haemochromatosis
  • Type 3 (TFR2) haemochromatosis
  • Type 4 haemochromatosis (ferroportin disease)

There may also be other genetic mutations which predispose people to iron overload. As medical research and our understanding of the human genome progress, these may become distinctly identified. In the meantime, our charity works to support anyone affected by genetic haemochromatosis, whatever its cause.

Learn about common symptoms

Excess iron is toxic and can affect many parts of the body. Many symptoms do improve with treatment.

Learn more

Learn about treatment

Treatment for genetic haemochromatosis is simple and clinically effective. If you have been diagnosed, it's important that you undergo treatment, to reduce the risk of clinical complications (and even death).

Learn more

Learn about the family implications

Genetic haemochromatosis runs in families, as it is inherited. If you are diagnosed with the condition, it's important to tell close family members so they can also be tested.

Learn more

Ask a question

When newly diagnosed, it may feel like you are the only person going through genetic haemochromatosis. We've collated some of the most commonly asked questions, best advice and information in our readily searchable frequently asked questions archive.

Ask a question

Talk to your friends and family about the condition

Genetic haemochromatosis is inherited. So it's important to talk to your family about the condition, so they can be screened for iron overload.

Learn how

Contact our helplines

Our helplines are available on weekdays with friendly, practical advice and support. You can contact us by phone or email.

Helplines

Follow us on social media

We are active on Youtube, Twitter and Facebook - follow us for regular advice & news.

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Share experiences with our Facebook Support Group

Our Facebook Support Group provides friendly understanding and support for anyone affected by genetic haemochromatosis. This is a public group and so we advise discretion if you decide to post messages to the group.

Start here

Published: 18th December, 2019

Updated: 29th March, 2022

Author:

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  • Advice lines

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

  • Genetics of haemochromatosis

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    Genetic haemochromatosis is an autosomal recessive condition, meaning that it is inherited. Whether someone inherits the condition, depends upon their parents' genetics.

  • 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.

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