We were delighted to attend the European Iron Conference EIC in Toulouse in April to represent patients and also attend the European Federation of haemochromatosis patient groups (EFAPH) AGM. There is amazing collaborative research being done throughout Europe on haemochromatosis. A very interesting paper on fatigue in patients with Hereditary Haemochromatosis was delivered by Michal Swiatczak from the University of Gdansk, where he and his team developed assessment tools for fatigue in haemochromatosis patients.
Dr. Heinz Zoller, University of Innsbruck, Austria presented his paper on the natural history of ferroportin disease. Dr. Janice Atkins, Dr. Luke Pilling, Dr. David Melzer and the team at the University of Exeter continue their research apace using the UK Biobank data. Dr Atkins delivered a presentation on their latest research on Haemochromatosis genotypes and the likelihood that the clinical condition will occur when different genotypes are present: Lessons from the UK Biobank. A large study was undertaken in Iceland on C282C homozygote cohorts by Inga Geirsdottir and Magnus Magnusson, University of Iceland delivered this presentation.
Another interesting piece of research is being done by Lucy Banfield and others at the University of Exeter on haemochromatosis and chondrocalcinosis (which is a painful type of arthritis that causes calcium crystal deposits in the joint tissue. This can lead to inflammation and cartilage damage). Mitchell Lucas, University of Exeter, among others is undertaking research on obesity and haemochromatosis using the UK biobank data.
Thank you also to Dr. Edouard Bardou-Jacquet who delivered a paper on the genetic characteristics of a cohort of C282Y patients in France. Sincere thanks to Dr. Mayka Sanchez for summarising the presentations at the conference and to the board of EFAPH and Haemochromatosis International who shared their country experiences and expertise. If you would like more information on the conference, please email us [email protected]
Your membership of the IHA makes us stronger and gives us a collective voice to advocate on behalf of our members, patients and their families. At this time of year, we encourage all our members to renew your annual membership and continue to be part of our 1,000 strong community!
Wear your Christmas jumper to support the work of the Irish Haemochromatosis Association OR make a gift of a donation big or small this holiday season to ensure that patients in Ireland get the help and support they need.
Thank you to all the Donegal community who came out in great numbers to attend our recent Patient Information evening in the Clanree Hotel in Letterkenny, Co Donegal. Over 120 people, some who travelled long distances, joined us on the night to hear Dr. Paul Grant’s talk and presentation on haemochromatosis.
