Resources

A study funded by Haemochromatosis UK into the prevalence of GH across the British Isles and Ireland

Medical care in the UK is generally of a high standard and huge strides have been made in understanding Genetic Haemochromatosis (GH), but more work needs to be done.

Option 5 of the Family Tree Poster probabilities

Option 4 of the Family Tree probabilities

Option 3 of the Family Tree probabilities

Option 2 of the Family Tree probability set

One of Five Option Family Trees - Pass it On Pack

A colourful and easy read guide to genetic haemochromatosis - Pass it On Pack

an A5 flier outlining what the charity and you can do for the cause

Organise an Iron Brew card

a quick guide available in the Pass it On Pack

A quick a easy guide to diet

A Postcard to share with family

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Information on our Genetic Test Kit Plus! Service

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Main blood tests used to diagnose haemochromatosis

Everyone, including people affected by haemochromatosis, should aim to eat a healthy, balanced diet.

This is by no means a full list (there are millions of cereals out there!) but hopefully a help to give you an idea of the iron that is added to cereals.

In 2025, researcher Maureen Ng'etich explored the diagnosis, care experiences and treatment pathways of individuals living with genetic haemochromatosis (GH) in Lincolnshire.

With over 380,000 people in UK affected by genetic haemochromatosis, pharmacists are increasingly seeing people with the condition.

"Genetic Haemochromatosis"

We have contacted private hospitals across the UK asking which ones carry out venesections and what the cost might be.

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

Haemochromatosis affects many people around the world. It is essential that those diagnosed with haemochromatosis, no matter where they live in the world, are able to access the help and support needed.

There are many different definitions about what Genetic or Genomic Counselling is and, in truth, almost every session is different!!

It’s possible to develop vitamin deficiency whilst undergoing venesection treatment for genetic haemochromatosis. Our leaflet explains more.

This guide provides an interpretation of common blood results for people with genetic haemochromatosis.

Type 4 genetic haemochromatosis is caused by genetic changes (mutations) to the SLC40A1 gene.

Type 3 genetic haemochromatosis affects middle aged adults but also adolescents and young adults (<30 years old).

Type 2 haemochromatosis is known as a juvenile-onset disorder because symptoms often begin in childhood.

Facts and figures: organising your content

This guide explains the rarer form of non-HFE genetic haemochromatosis, also known as type 3 or TFR2-related GH.

When you have GH it’s important to tell your adult family members as they might be at risk of iron overload.

How to tell your family that you have GH

People with genetic haemochromatosis want to play an active role in society. Many want to work, if they are able.

Training: organising your content

A guide to help you understand skin conditions associate with GH

Seminar by Professor Fitzsimons about genetic haemochromatosis.

Dr Patrick Kiely from St George's Hospital, London, discusses haemochromatosis arthropathy.

If you are “S65C homozygous” it means that you have inherited 2 copies of the milder S65C variant, one from each of your biological parents.

If you are a “S65C carrier” it means that you have inherited a single copy of the S65C variant from one of your parents. This is sometimes called a heterozygous carrier.

Venesection procedure - Step by Step

Venesection helps to reduce excess iron stores through a repeated process of blood removal - and the body's subsequent replacement of the blood removed.

Time out activity

Time out activity

Learn about the risks and complications of venesection

References and suggested further reading

Learn about the psychological impact of GH

Treatment requires venesection on a regular basis, where a large bore needle is inserted into a vein and approximately 450mls of blood is removed.

An overview on GH worldwide

GH is caused by the inheritance of two mutated copies of the HFE gene (meaning high ferritin) leading to increased iron absorption across the intestinal mucosa.

Additional reading resources.

Refresh your understanding of genetic haemochromatosis by watching this video (15 minutes).

Recap your learning by watching this video (15 minutes) which provides an overview of genetic haemochromatosis diagnosis, treatment and genetics.

Venesection should only take place when a clear written request is made by a relevant health care professional.

Additional resources

This module specifically covers type 1 (HFE mutation) genetic haemochromatosis.

An informative guide for prospective parents, either or both of whom, have genetic haemochromatosis.

Nursing eLearning Module

List of useful resources

Our guide provides helpful techniques to reduce anxiety.

This guide for parents and carers explains the rare type 2 variant of genetic haemochromatosis, which typically affects young people under 25 years old.

This page explains how to correctly take a genetic test sample and complete a genetic test request form, if you are using our genetic testing service.

An Iron Brew is a great way to mix and meet with new people living with and/or affected by Haemochromatosis.

Rydym wedi cyhoeddi'r canllawiau hyn yn gymraeg. Gyda diolch i Sefydliad Moondance a chronfa gymunedol y Loteri Genedlaethol yng Nghymru.

Rydym wedi cyhoeddi'r canllawiau hyn yn gymraeg. Gyda diolch i Sefydliad Moondance a chronfa gymunedol y Loteri Genedlaethol yng Nghymru.

Rydym wedi cyhoeddi'r canllawiau hyn yn gymraeg. Gyda diolch i Sefydliad Moondance a chronfa gymunedol y Loteri Genedlaethol yng Nghymru.

Rydym wedi cyhoeddi'r canllawiau hyn yn gymraeg. Gyda diolch i Sefydliad Moondance a chronfa gymunedol y Loteri Genedlaethol yng Nghymru.

Carrier is the term used when someone has been shown to have inherited a single copy of the HFE gene mutation from one of the parents. This is sometimes called a heterozygous carrier. Carriers might be at risk of iron loading.

If you are “H63d homozygous” it means that you have inherited 2 copies of the milder H63D variant, one from each of your biological parents.

At Haemochromatosis UK we have an Education Programme specifically tailored to GPs to get identify and diagnose patients with genetic haemochromatosis as well as offering support and ongoing treatment to patients already diagnosed.

This module provides an overview of genetic haemochromatosis, including the signs, symptoms, diagnosis, treatment, and management of the condition.

This guide, produced by the employment law team at Gowling WLG (UK) LLP, provides advice to employers whose staff have genetic haemochromatosis.

From Friday 8th May 2020, in response to Haemochromatosis UK lobbying, NHS BT will be relaxing their donation criteria

This online eLearning module provides an overview of genetic haemochromatosis, including the signs, symptoms, diagnosis, treatment, and management of the condition.

Seminar about GH joint arthropathy

Our charity runs an education programme to train and equip clinicians to accurately diagnose genetic haemochromatosis in the community.

A guide for GP's

Guide to Ferroportin

This module helps nurses understand the genetics of haemochromatosis, plus best practice venesection care and aspects of blood and needle phobia.

This module provides an overview of genetic haemochromatosis, including the signs, symptoms, diagnosis, treatment, and management of the condition.

While the condition is often associated with mutations in a single gene, particularly the HFE gene, recent clinical cases of digenic inheritance have been identified.

If you have a lot of great stories to tell, consider breaking them into sections, years or themes. You can then use separate posts in a listing page to bring them together (write a short intro for the listing page).

The impact genetic haemochromatosis can have on mental health.

Genetic haemochromatosis is the UK’s most common genetic condition, directly affecting over 380,000[1] people.

Learn about Genetic Haemochromatosis and Diabetes

Guide describing genetic haemochromatosis in the clinical setting

This booklet is for people with genetic haemochromatosis who have developed cardiomyopathy as a result of iron overload.

People who have one gene C282y and one gene S65C are known as “compound heterozygotes”.

This is the most common variant of the condition in the UK, affecting 9 in every 10 people diagnosed.

People who have one gene C282y and one gene H63d are known as “compound heterozygotes”.

What is the "C282y" variant

Many older people with genetic haemochromatosis experience arthropathy and associated acute joint pain.

Spoon Theory is a way of describing the experience of living with a disability or a chronic illness.

Comprehensive guide for nurses & healthcare practitioners

Excess iron (caused by iron overload) is extremely toxic and can affect many parts of the body.

Inherited (genetic) disorders are caused by defective genes in the cells which make up the body.

We work closely with NHS Blood & Transplant to create opportunities for people with genetic haemochromatosis to become blood donors.

In Scotland, people with genetic haemochromatosis who are in the maintenance phase, can become blood donors through the Scottish National Blood Transfusion Service (SNBTS).