From June, our charity will be introducing a new genetic testing service for members' families, for just £39 per test. This service is subsidised by the charity as a preventative health initiative. Initially, it will be available to HUK members as a benefit of membership.

Pre-order a test kit for £39

So, how does it work?

Genetic testing – at a glance

  • Order a testing kit online - we'll send you a test kit by post
  • Do the test and pop the sample it in the pre-paid post 
  • We send you and your GP the results within 2 weeks 
  • Arrange an appointment with our Advanced Nurse Practitioner to discuss the results

Plus - continued support from us when or if you need it. All this is included in the test kit price of £39 for HUK member.

Pre-order a test kit for £39

What is this initiative about?

Our charity has partnered with a MHRA-accredited laboratory to offer genetic testing by post for the most common variants of genetic haemochromatosis (c282y, h63d).

This service is offered to Haemochromatosis UK members for £39 per test as a subsidised benefit of membership. It's available for family members aged 18 or older. If you are eligible, we’ll send you a testing kit by post. You collect the sample and return it to our lab by post. We then send you and your GP the results about 2 weeks later.

Our charity is here to help throughout the service, from initial discussions around whether to arrange a test, through to counselling, advice, information and support following the results. We are also able to help with any questions or concerns following a diagnosis resulting from a test and to advise on the next steps in the care pathway.

The test requires a small blood sample (about a teaspoon’s worth) and so is not suitable for people who are blood or needle phobic.

Who is this genetic testing service for?

This service is available to members of Haemochromatosis UK and their families.

NHS support for genetic testing for iron overload varies across the country. Many members tell us that they struggle to arrange tests for their families through the NHS. Where NHS services are available, they’re often slow – people can be left worrying unnecessarily for 2 months or more, waiting for results. Genetic counselling services are also hard to access – it can often take months following a test to have an appointment to discuss the implications of the results.

We want to fix this, whilst continuing to encourage the NHS to improve its services to people at risk of genetic haemochromatosis/iron overload.

Briefly, what’s involved?

If you are eligible for the service, we will post a genetic testing kit to you. This contains everything you need to take a sample and return it to our lab. It includes full instructions showing how to take the sample yourself. You take the sample by making a small prick on a finger and squeezing about 5 ml (about a teaspoon) of blood into a tube.

The testing kit contains everything you need, including instructions, sterile wipes, lancets (for making the finger-prick) and a reply-paid address label to return the sample by post to our lab. Once you’ve collected a sample, simply return it the same day by post.

When the lab receives your sample, they will analyse it. They will look for the most common variants of genetic haemochromatosis (known as c282y and h63d). These variants account for over 90% of people with genetic haemochromatosis in the UK.

Once the results are available, we will write to you with a copy of the results, explained in plain English. If the person tested has genetic haemochromatosis or is a carrier, we will offer them a telephone consultation to discuss the results with our GH Advanced Nurse Practitioner. We will explain to them what the results mean. It’s also an opportunity for them to ask any questions they may have about the results.

We will also write directly to their GP with details of the test results and our “Quick Guide to Haemochromatosis for GPs” so they are aware that a test has been done – and so they know what the next steps in providing care should be.

Is it easy to take the sample?

Yes. Every testing kit provides detailed instructions on how to take the sample. We also provide telephone and email support from our lab partners to help with any questions. The process takes just a few minutes – plus a walk to the post box to return the sample on the same day in the reply-paid envelope provided!

How long does the service take?

We aim to provide the results to the person taking the test and their GP within 2 weeks from receipt of the sample.

How much does the service cost?

The service will be available initially for £39 per test kit. The costs are subsidised by our charity as a preventative health initiative and so are significantly cheaper than commercial services.

Pre-order a test kit for £39

Why is Haemochromatosis UK launching this service?

We know that early diagnosis of genetic haemochromatosis saves lives. Yet many people struggle unnecessarily to get family members tested through the NHS. Commercial services are expensive and there are concerns about the quality, privacy and efficacy of some services available in the UK.

Prevention of ill-health is better than cure. We hope this service helps people understand their own risks of iron overload - and to live well with the condition if they have it.

This initiative compliments existing NHS services; if someone tested is found to have genetic haemochromatosis, their onwards care is the responsibility of the NHS.

We are partnering with a MHRA-accredited laboratory partner. They specialise in genetic testing and work with numerous NHS trusts, including University College London, King’s College London and Great Ormond Street Hospital. Last year, they processed over 40 million samples in the UK, seven-days-a-week.

Am I eligible for this service?

We are providing this service to existing members of Haemochromatosis UK for testing a family member who is :

  • 18 years old or older
  • Resident in England, Scotland, Wales or Northern Ireland
  • Already registered with a NHS General Practitioner or surgery

We have published the detailed terms and conditions for service here.

I am not a Haemochromatosis UK member, can I access this service?

Presently, no. The service is a subsidised benefit of membership of our charity. If you are a Haemochromatosis UK member, you can order a test kit online.

Can I use this service to test a child?

Initially, the service is available to test people aged 18 or over. There are many additional aspects to consider before testing young people under 18 years old. If you are concerned to understand the genetic status of young people in your family, consider getting both parents tested first. As genetic haemochromatosis is inherited, this can provide simple and speedy reassurance of the likely genetic status of a child, without testing the child. If you would like to arrange testing of a child aged 16 or 17 please contact us to discuss your options, first.

I have a large family – how many testing kits can I buy?

Initially, we are limiting orders to a maximum of TWO per family. If you think you will need more, please contact us to discuss your options.

Will this service tell me about other genetic conditions I may have?

No. This service will only test for the two most common mutations associated with genetic haemochromatosis, known as HFE mutations c282y and h63d.

Will this service tell me whether someone has Type 2 or Type 3 or Type 4 genetic haemochromatosis?

No. This service will only test for the most common Type 1 mutations of genetic haemochromatosis. Due to the complexity of the process, the genetic sequencing costs for Type 2/3/4 are currently cost-prohibitive, though we hope to offer these as an "add-on" if prices fall over time. 

Will this service tell me how much Viking/Celtic/Pictish/Anything ancestry I have?

No. This is a preventative health initiative, not a gimmick. Undiagnosed, iron overload can cause serious ill-health. We want to help families at risk by providing a timely and responsible assessment of their genetic risks of iron overload. Early diagnosis saves lives.

Does this service protect my privacy?

Yes. Unlike commercial services, we do not re-sell your genetic data to third-parties or license data to pharmaceutical companies or others. Haemochromatosis UK is a Data Controller registered and regulated in the UK by the Information Commissioner’s Office (reference Z5256349).

Can my family help others, by getting involved?

Yes. Our charity undertakes medical research to help people affected by genetic haemochromatosis. This research also helps to inform our advocacy of policymakers, elected representatives and other stakeholders.

With your consent, the anonymised results of the tests can be analysed by our research team to help us better understand the prevalence of genetic haemochromatosis (ie how many people have the genetic mutation that predisposes people to iron overload) across the UK, by age and gender.

All data is held securely according to our data protection and privacy policy. You may opt-out of participating in our research when ordering kits, if you prefer.

I’ve changed my mind, can I return a kit for a refund?

No. This service is non-refundable once ordered. For infection-control reasons we cannot re-use testing kits once they have been despatched, even if returned “unused”.

My sample wasn’t suitable for analysis, can I have a refund?

No. This service is non-refundable once ordered. Full instructions are provided with each testing kit to ensure a sample is collected correctly. It’s important to return the sample on the same day that it is taken, ideally on a weekday, so the sample is returned by post promptly for analysis.

I have a question that you haven't answered on this page...?

No problem, just contact us to get in touch (weekdays 9am-3pm).