EFAPH is the European Federation of Associations of Patients with Haemochromatosis, an umbrella group bringing together like-minded patient organisations from across the continent.
The EFAPH AGM 2018 was held on 11 February and was attended by three representatives from the UK: David Head, Chief Executive; Howard Don, Chairman; and Professor Rob Evans, Scientific Adviser.
This is a summary of the topics covered at that meeting (note these are not official minutes).
The meeting was opened by Dr Barbara Butzek, President of EFAPH and of the German haemochromatosis society. Many of our members will recognise Dr Butzek as one of our speakers at The Genetic Haemochromatosis Patient Conference 2017.
During her opening address Dr Butzek commended the work of all the scientists that had been involved in the previous day’s European Iron Club scientific meeting, several of whom had taken the time to join the EFAPH meeting.
Sadly, Dr Butzek also announced that she would be stepping down from the President’s role at the next EFAPH AGM in 2019, giving the organisation a year to plan for a new president. Her drive and hard work has been instrumental in the success of EFAPH and (more recently) Haemochromatosis International.
The meeting heard a report on the 2017-18 activities of EFAPH, which included board meetings and telephone conferences, meetings with scientists, work with Eurordis (Rare Disease Europe), membership of the European Rare Disease Federation, membership of the European Patients’ Forum (EPF), European Reference Networks and Eurobloodnet. EFAPH has also been supporting and active in the Haemochromatosis Arthropathy Research Initiative, which The Haemochromatosis Society also supports by funding Dr Patrick Kiely’s expenses.
A brief summary of EFAPH’s finances reported that the organisation was strong financially but that activities planned for 2018 and 2019 would eat substantially into the assets held, and that new grant funding was being sought. The budget for 2018 was approved however.
Professor Grace Porto from the EFAPH Scientific committee brought a summary of the last fews days’ meeting of the European Iron Club (http://haemochromatosis.org.uk/zurich-2018-day-1) to EFAPH members. Dr John Ryan from Oxford University spoke about his research work as did Dr Stephanie Finzel from University Erlangen in Germany; both publications are pending and we will report details of these programmes as soon as we are permitted to do so.
EFAPH membership has been offered to patient organisations in Sweden, Romania and The Netherlands.
Reports from Member Organisations
- Brigitte Pineau of the French society described their very successful programme in Paris engaging with GPs, including the production of a very simple A5 card Comment Ne pas “Passer a cote” d/une hemochromatose (How Not To Miss Haemochromatosis) which has led to improved awareness, as measured by a subsequent survey of Paris doctors.
- Maria Abele of the Hungarian society outlined how the group, with media intervention, had convinced the Hungarian Blood Service to accept blood from iron overload patients. In doing so, the group also secured lots of radio and newspaper coverage, raising awareness of the condition nationally.
- David Head from The Haemochromatosis Society (UK) described how demand for information from members and the wider patient community had led to the design and production of a new booklet entitled Healthy Eating and Haemochromatosis.
- Margaret Mullett of the Irish Haemochromatosis Association described several of their recent awareness raising projects, patient events, and plans for the upcoming Haemochromatosis Awareness Week
International Haemochromatosis Awareness Week (HAW) 2018
A common date for HAW had been agreed earlier by EFAPH and Haemochromatosis International. The agreed week is 02-10 June. Rob Evans and Howard Don presented a number of ideas for activities during that week before opening up debate on the subject. The general consensus was that as this will be the very first international awareness week, it is important to do a few basic things very well rather than being overly ambitious or complex. Common use of social media, a HAW logo, and key messages were all agreed as the way forward in order to strengthen perception of iron overload as an international issue that needs addressing in a consistent manner.
NB The Haemochromatosis Society (UK) has set up a Haemochromatosis Awareness Week Committee, amusingly called HAWC, and will be an active participant in this years event with several activities and a patient information day planned for the week.