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  1. Get help
  2. Information & advice

Information & advice

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. 

Time For Change - Towards Genetic Screening

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. Read more

Published: 3rd February, 2021

Updated: 16th February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
Covid-19 and genetic haemochromatosis

Covid-19 and genetic haemochromatosis

Fully revised and updated in January 2021, this booklet provides answers to common Covid questions. Read more

Published: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
Genetic haemochromatosis - a quick guide for GPs

Genetic haemochromatosis - a quick guide for GPs

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

Published: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
Genetic haemochromatosis - a guide for nurses & healthcare practitioners

Genetic haemochromatosis - a guide for nurses & healthcare practitioners

This guide for nurses & healthcare practitioners is a companion to our Venesection Best Practice Guidance (endorsed by the Royal College of Nursing). Read more

Published: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
Pituitary conditions and genetic haemochromatosis

Pituitary conditions and genetic haemochromatosis

Iron overload can cause a range of pituitary issues, including loss of libido, Addison's Disease (adrenal insufficiency) and menstrual problems. Read more

Published: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
Skin conditions and genetic haemochromatosis

Skin conditions and genetic haemochromatosis

Skin conditions can occur when you have genetic haemochromatosis . This guide explains the symptoms and what can be done to help. Read more

Published: 25th January, 2021

Updated: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
Understanding your blood test results

Understanding your blood test results

Blood test results can be baffling - our guide helps to explain what each test is about. Read more

Published: 19th January, 2021

Updated: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
Cardiomyopathy & genetic haemochromatosis

Cardiomyopathy & genetic haemochromatosis

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

Published: 19th January, 2021

Updated: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
A guide to preparing for venesection

A guide to preparing for venesection

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

Published: 19th January, 2021

Updated: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
Overcoming blood and needle phobias

Overcoming blood and needle phobias

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

Published: 17th September, 2020

Updated: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
Helpful breathing techniques

Helpful breathing techniques

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

Published: 16th September, 2020

Updated: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
Arthropathy and joint pain

Arthropathy and joint pain

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

Published: 10th February, 2020

Updated: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
State of The Nation 2020

State of The Nation 2020

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

Published: 7th February, 2020

Updated: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
Haemochromatosis Handbook (6th edition, 2020)

Haemochromatosis Handbook (6th edition, 2020)

The Haemochromatosis Handbook is an essential resource for people affected by genetic haemochromatosis, their families and healthcare professionals. Read more

Published: 6th February, 2020

Updated: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
Venesection Best Practice

Venesection Best Practice

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

Published: 29th January, 2020

Updated: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
The impact of iron overload

The impact of iron overload

In 2017, our charity conducted the world's largest survey of people affected by genetic haemochromatosis. Read more

Published: 28th January, 2020

Updated: 3rd February, 2021

Author: Neil McClements

Related topics:
  • Information & advice
Genetics of haemochromatosis

Genetics of haemochromatosis

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

Published: 14th January, 2020

Updated: 3rd February, 2021

Author: Phil Treble

Related topics:
  • Information & advice
Explaining genetic haemochromatosis to friends & family

Explaining genetic haemochromatosis to friends & family

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

Published: 18th December, 2019

Updated: 3rd February, 2021

Author:

Related topics:
  • Information & advice
  • Talking about...
Travelers outreach

Travelers outreach

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

Published: 18th December, 2019

Updated: 3rd February, 2021

Author:

Related topics:
  • Information & advice
  • Projects
Living well with GH

Living well with GH

Changes to your diet cannot prevent iron overload. Check out our guide to healthy eating. Read more

Published: 18th December, 2019

Updated: 3rd February, 2021

Author:

Related topics:
  • Information & advice
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Showing 10 of 20

Latest

  • Kidszone

    Kidszone

    Resources for children and young people affected by genetic haemochromatosis. Published March 2021.

  • Kidszone launches this month

    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

    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

    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

Most read

  • Coronavirus Update

    Coronavirus Update

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

  • Ask the doctor

    On Thursday 26th March 2020, we put our members' questions about genetic haemochromatosis and coronavirus to Dr Susan Hancock FRCGP, a member of our Clinical Advisory Panel.

  • What is Transferrin Saturation ?

    What is Transferrin Saturation ?

    Gerri our Advanced Nurse Practitioner explains what Transferrin Saturation is and why it is important to keep it at the correct levels.

  • Ask the doctor (part 2)

    On Thursday 2nd April 2020, we put further members' questions about genetic haemochromatosis and coronavirus to Dr Susan Hancock FRCGP, a member of our Clinical Advisory Panel.

  • CV19 Vaccine & Haemochromatosis

    CV19 Vaccine & Haemochromatosis

    Advice and information on the new Covid-19 vaccines for people affected by genetic haemochromatosis. Updated 6th January 2021.

  • Liver cancer ten times more likely in men with GH

    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.

  • UK National Screening Committee Consultation

    UK National Screening Committee Consultation

    This month, UK National Screening Committee has commenced a consultation on screening for genetic haemochromatosis in adults.

  • What's it like becoming a GH blood donor?

    What's it like becoming a GH blood donor?

    Our Social Media Community and Volunteer Manager, Elizabeth reflects on her experiences of the new blood donation scheme and shares some details from behind-the-scenes.

  • 2020 Conference Postponement and AGM Update

    2020 Conference Postponement and AGM Update

    Haemochromatosis UK have taken the very difficult decision to postpone this year’s conference which was to be held in Manchester on Saturday the 4th of April due to the Covid-19 outbreak.

  • Frequently Asked Questions About Genetic Haemochromatosis

    Frequently Asked Questions About Genetic Haemochromatosis

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

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