Resources for children and young people affected by genetic haemochromatosis. Published March 2021. Read more
We provide a wide range of publications, covering aspects of genetic haemochromatosis.
Many of these information & advice guides are included in every membership pack as just one of the benefits of membership. Join us today and receive your own printed copies.
Leaflets discussing the issues of brain fog, mood swings, depression and anxiety that people diagnosed with genetic haemochromatosis frequently report and where to get help. Read more
Everyone deserves great NHS care. But if something goes wrong or isn’t working for you, what can you do? Read more
Haemochromatosis Genynnol - Anhwylder Gorlwyth Haearn (in Welsh, published March & April 2021) Read more
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. Read more
Fully revised and updated in January 2021, this booklet provides answers to common Covid questions. Read more
This detailed guide for General Practitioners and primary care practitioners covers a wide-range of issues from diagnosis, genetic testing, ongoing care pathways and more. Read more
This guide for nurses & healthcare practitioners is a companion to our Venesection Best Practice Guidance (endorsed by the Royal College of Nursing). Read more
Iron overload can cause a range of pituitary issues, including loss of libido, Addison's Disease (adrenal insufficiency) and menstrual problems. Read more
Skin conditions can occur when you have genetic haemochromatosis . This guide explains the symptoms and what can be done to help. Read more
Blood test results can be baffling - our guide helps to explain what each test is about. Read more
Cardiomyopathy is a heart condition where the walls of the heart muscle are thicker than usual. People with GH can develop cardiomyopathy as a result of iron overload. Read more
Venesection is mainstay treatment for haemochromatosis. Read our advice on how to best prepare yourself before a venesection and what to consider afterwards. Read more
A phobia is a type of anxiety disorder in which a person develops an overwhelming and devastating fear about a situation, place, object, animal, or insect. This guide provides helpful techniques to reduce anxiety. Read more
Some people can get nervous about medical procedures, especially before a venesection or blood test. We share a simple breathing technique, which can help. Read more
Many older people with genetic haemochromatosis experience arthropathy and associated acute joint pain. This guide by the Haemochromatosis Arthropathy Research Initiative (HARI) was part-funded by our charity. Read more
Our State of the Nation report illustrates current clinical practice regarding the care of people with genetic haemochromatosis (GH), across the United Kingdom. Read more
The Haemochromatosis Handbook is an essential resource for people affected by genetic haemochromatosis, their families and healthcare professionals. Read more
Over the past 4 years, our charity has worked to improve patient safety, through the development of best practice guidance for venesection. Our Venesection Best Practice Guidance is endorsed by the Royal College of Nursing, Read more
In 2017, our charity conducted the world's largest survey of people affected by genetic haemochromatosis. Read more
Genetic haemochromatosis is an autosomal recessive condition, meaning that it is inherited. Whether someone inherits the condition, depends upon their parents' genetics. Read more
When you have GH it’s important to tell your adult family members as they might be at risk of iron overload. This includes your biological parents, sisters, brothers, their children, and your own children. Read more
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. Read more
Changes to your diet cannot prevent iron overload. Check out our guide to healthy eating. Read more