Two important international meetings took place on the weekend of Sunday 25 June and Monday 26 June 2017, as the European Federation of Associations of Patients with Haemochromatosis (EFAPH) and the European Iron Club (EIC) gathered in Muenster, Germany. The Haemochromatosis Society was being represented at the meetings by scientific adviser Professor Rob Evans and our Chief Executive David Head, both of whom addressed the EFAPH group. Professor Evans also spoke to the EIC group in his capacity as a trustee of Haemochromatosis International.
Sunday 25 June
The morning saw the EFAPH annual general meeting. EFAPH is a European patients’ organisation currently comprising 12 national associations representing patients with haemochromatosis, and is led by Dr Barbara Butzeck of the German society.
After the usual formalities and welcomes the meeting opened with a presentation covering the activities of the organisation since the last AGM in Innsbruck in 2016.
Activities reported included several meetings of the EFAPH board, contributing to the development of the worldwide umbrella organisation Haemochromatosis International, relationships with EURORDIS (Rare Disease Europe), working on patient empowerment alongside the European Patients’ Forum, liaising with Euro Blood Net, the Haemochromatosis Arthropathy Research Initiative (see video of Dr Patrick Kiely here), raising funds through commercial sponsorship, and developing the Europe-wide publication Hemo News.
We also heard about the potential creation of a GH patient organisation in Romania and plans to co-ordinate a world-wide GH awareness day or week; The Haemochromatosis Society (UK) has now offered to help promote an international awareness day provided EFAPH and HI can co-ordinate things so that all of the national organisations are working with a common date.
EFAPH continues to grow as an influence in Europe, however further sponsorship is needed from the commercial sector if it is to continue. Working on international projects and arranging meetings for people from across the continent is expensive.
Dr Mayka Sanchez updated the EFAPH meeting with a few highlights from the recent BioIron conference in Los Angeles that were relevant to haemochromatosis patients. Of particular interest were:
- a study of C282Y homozygous patients, some of whom were loading iron and some not, to look at the impact of mutations on other genes. Could these be accounting for the variable rates of penetrance of iron overload?
- speculation and the start of work to identify whether bowel cancers might be more prevalent in people with iron overload,
Our own Chief Executive, David Head, gave a short presentation about the planning and success of our CPD conference in March of this year. The other national groups’ representatives were interested in how we had organised and financed the event, attracted eminent speakers, and generated a paying audience. David also gave an introduction to our current project to survey at least 1,000 haemochromatosis patients, and encouraged all of the organisations present to make their members aware of the questionnaire (see http://www.haemochromatosis.org.uk/survey2017).
Included in other short presentations were updates from the European Patients’ Forum, progress with getting haemochromatosis recognised formally as a rare disease, news from the development of the international body Haemochromatosis International, and successful awareness raising activities in France (notably in Paris).
Many of the members of EFAPH are keen that GH is recognised as a rare disease by EURORDIS, although this is not a view shared by the UK and Irish societies who maintain that the most effective way of raising awareness of the condition is using the fact that it is in fact the most common genetic condition in people of northern European origin. However, moves are underway to secure recognition of the rare forms of the disease, which may lead in turn to improved access to research funding across the continent.
Sunday 25 June – Monday 26 June
European Iron Club Meeting
The European Iron Club is a network of scientists and clinicians from across the continent with an interest in iron metabolism. Although this is broader than just considering iron overload, haemochromatosis is an important subject for the group.
“The European Iron Club exists to foster communication and collaboration among biomedical scientists and clinicians whose work is concerned with iron. Europe-based research groups cover a wide variety of iron-related topics, ranging from iron biochemistry to the genetics of iron metabolism and the treatment of iron-associated human diseases.” EIC Website
The society is represented at a scientific level in the EIC by Professor Rob Evans, Professor of Biomedical Sciences and Director of Biosciences at Brunel University in London. Professor Evans will be writing a report from the BioIron and EIC events for the society’s board and for the members’ magazine summer 2017 issue.
Over the course of a intensive and wide ranging programme the meeting heard from over 20 speakers on a whole host of topics, many of which are relevant to genetic haemochromatosis, including:
- The role of chelation therapy (use of drugs to de-iron the body)
- Next Generation Sequencing (advanced genetic testing)
- Ferroportin Disease (Type 4 haemochromatosis)
- Optimisation of the management of GH using MRI technology
- Issues around diagnostic delays across Europe
- Transferrin saturation and liver disease
- Candidate genes modulating of iron overload in C282Y patients
- Iron overload in patients undergoing surgery
- Iron in the brain
The Haemochromatosis Society intends to maintain its status as a full member of EFAPH and contribute to the work of the federation where we can. The society also intends to learn more from the EIC and BioIron networks and disseminate research information to patients more effectively than we have done in the past.