As with many conditions, when someone is diagnosed one of the immediate priorities for a genetic haemochromatosis (GH) patient is the need for information along with a source of sensible, reliable guidance and support. The Haemochromatosis Society provides this in several ways.
The Haemochromatosis Helpline
Individual guidance on dealing with various aspects of haemochromatosis is available by calling The Haemochromatosis Helpline on 03030 401102 or by sending an email to firstname.lastname@example.org with your questions. Trained volunteers who are affected or who have a family member who is affected will do their best to support you. For more information about the service please visit http://www.haemochromatosis.org.uk/support/helpline.
This website is a comprehensive source of information, is not heavily scientific and is designed to be accessible to all. The information published on the site is checked by our medical advisers and/or sourced from respected and reputable sources. However, please be aware that information provided is generic, and cannot be a replacement for individual medical advice from your GP or consultant. The legal small print in this regard can be found at the top of our Terms and Condition page.
You can search the site using the search function at the top right hand side, or you can use the menus across the top or to the left to navigate to pages of interest. Alternatively, you can click on the >> NEXT PAGE link at the foot of every page and work through the whole site, though that might be a lot to absorb on your first visit!
Please tell us if anything is unclear, or if you spot any errors or broken links.
The Haemochromatosis Handbook
The charity publishes The Haemochromatosis Handbook, now in its fifth edition (January 2017) and very well received by GH patients. Consisting of over 70 pages of information and endorsed by respected medical advisors, the handbook is essential reading for anyone effected.
You will receive a free copy of the current version of The Haemochromatosis Handbook when you join the society. Additional copies can also be ordered at £8.99, for example to pass to family members who may be affected or to give to your GP.
By becoming a member of the charity, you will also be subscribed to monthly email bulletins and to our regular newsletter, produced 3-4 times a year. These will keep you appraised of research news, changes in clinical practice, the charity’s activities, meeting and conferences, links to other sources of information and support, and much more.
Membership of the society also brings other advantages, please view our Join Us page for more details.
As well as the handbook and newsletters referred to above, the charity produces a range of leaflets and flyers, to inform patients and the general public. We also have some materials designed to ensure that healthcare professionals, especially GPs, are well informed.
THS moderates an online support group on Facebook which links 4,000 people and also has it’s own Facebook page. In addition the charity is on Twitter and regularly tweets about its events and activities and about news relating to haemochromatosis. You can join, follow, like and so on by using the links to the upper left of this site, or the Facebook and Twitter icons at the very top of the page. Social media is a very powerful way of linking with others and sharing experiences, but please take measures to remain safe online.