Charity Registered charity no. 1001307 Member since December 2016 Donate now

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Small Charity Week

Small Charity Week

It's #SmallCharityWeek! We're delighted to celebrate the valuable work that small #charities do. Our CEO is mentoring other charities this week - problems shared = problems solved. #PayingItForward For event details :

Venesections cancelled or delayed?

Venesections cancelled or delayed?

Has your Venesections been cancelled or delayed? Our charity has negotiated special arrangements for people with Genetic Haemochromatosis to give blood via the NHS during the #Covid19UK outbreak. HUK members have been sent details via email today. Let's help our NHS heroes!

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We run a telephone and email helpline, to provide people with support and advice. Haemochromatosis can be a frightening and painful condition. Every year, our helpline team of trained volunteers handle almost 2,000 calls and emails from people needing help. All too often, the NHS is ill-equipped to assist and so we are seeing increased demand on our services Especially with the effects of Covid-19 and patients concerns regarding the implications.

Since Covid-19 outbreak, our telephone and email helplines have experienced as many requests for help in 2 days as we would normally see in two weeks, from people trying to understand the implications of Covid-19 for them. 

Life In The Time of Coronavirus

Life In The Time of Coronavirus

Over recent weeks, our charity has been helping increased numbers of people with Genetic Haemochromatosis, concerned about coronavirus.

Following government restrictions, we have temporarily closed our offices. But the work goes on! Our team have moved to a distributed work-from-home model. This is working well. Some of our staff and trustees have had CV19 but are – mercifully - fully recovered now.

During March, we experienced a five-fold increase in requests for help via our helplines. We’ve been well-placed to help people; the helpline team is already distributed and our phone system is holding up well. We’ve now refined our helpline volunteer training so it can be delivered online as a correspondence course and test, as well as face-to-face. That’s enable us to recruit additional volunteers to help during the lockdown period as the volume of calls grows. We're always seeking additional helpline volunteers, get in touch if you'd like to learn more.

Our recently re-launched website, has seen a massive upswing in demand for help and advice - over 20,000 people visited the website in March alone. We've fielded interest from over 20 countries, as far away as Australia, New Zealand, Bangladesh and Thailand.

We’ve been providing regular Covid-19 updates for people with Genetic Haemochromatosis. This has included online webinars with Dr Susan Hancock (FRCGP) where we put people’s questions about CV19 to her, for a response. The feedback has been amazing :

“I just wanted to say how clear, helpful and informative the "Ask the Doctor" webinar have been. Thank you for making them available. “ – Andy

“I have just watched the video question time part 2. The omeprazole item was of special interest to me and on a lighter note, I'm relieved my daughter will be able to try and find a plumber. Thank you for all the support you are giving us at this time.” - Marie

We're grateful for members' feedback and are planning further online webinars for the coming weeks. Check out for links to the videos and transcripts.

Regrettably, all of our community fundraising and clinician education events have been cancelled until September, due to lockdown restrictions. But we look forward to re-starting these as soon as we are able.

We wish all our members good health and our best wishes.