Resources for children and young people affected by genetic haemochromatosis. Published March 2021. Read more
The Spring All-Party Parliamentary Group on Genetic Haemochromatosis will be held online via Zoom webinar on Wednesday 17th February at 2.30pm. Read more
The minutes of the meeting held on 2nd of December 2020 have been published and can be downloaded here. Read more
The final APPG for Genetic Haemochromatosis of 2020 will be held online via Zoom webinar on Wednesday 2nd December at 2.30pm. Read more
Haemochromatosis effects people from all over the world. Here is where you can find contact details of charities and associations that help and support those with haemochromatosis in many different countries around the world. 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
Stephen McGann - why I support Haemochromatosis UK Read more
We provide specialist support for members from our haemochromatosis advanced nurse practitioner on all aspects of your diagnosis, care, treatment and genetics. Read more
We've collated the latest advice on staying well during the Covid-19 pandemic here. 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
This is a transcript of the video "Haemochromatosis & blood-injection-injury phobia", a guide for clinicians, presented by Dr Haris Yennadiou. Read more
This is a transcript of the video "What is genetic counselling?" presented by Helen Bethell. Read more
This is a transcript of the video "What to do when things go wrong...", presented by Tim Spring (partner, Moore Barlow). Read more
In Scotland, people with genetic haemochromatosis who are in the maintenance phase, can become blood donors through the Scottish National Blood Transfusion Service (SNBTS). Read more
People with genetic haemochromatosis may become donors with the Northern Ireland Blood Transfusion Service (NIBTS). Read on for further details. Read more