EHC Newsletter December 2015

4
President and CEO Report
Extended edition
For the past few years our end-of-year message has focused on the EHC’s continued growth, which is
thankfully evidenced again this year – and not least by the size of this newsletter – and for which we
are grateful to our external partners and volunteers for continuing to make our work – and dare we
hope our positive impact in Europe –
possible.
Brian O'Mahony is the EHC President. Amanda Bok is the EHC
CEO.
The highlights of the last
quarter
It has been a particularly busy few
months since our August edition – and
beyond that another productive and
enriching year. This year we held three
successful Round Tables; the last one,
which was held in the wake of the
Brussels security shut-down, still
brought together more than 30 avid
participants to discuss the unique
challenges of mild and moderate
haemophilia (see pg 35). We successfully and proudly piloted the EHC Leadership Conference (see pgs
22 and 24) and followed it immediately with our annual EHC Conference (see pg 13), which proved to
have the highest attendance of our conferences to-date. We trained our Russian-speaking National
Member Organisations (NMO) in economic concepts (see pg 29) and our wider stakeholders in new
technologies (see pg 30). We were delighted to launch our European Inhibitor Network earlier in the
year and held our first event during our Conference in Belgrade in October (see pg 17). During the
same conference, we also started a conversation about the activities that are conducted throughout
Europe to serve the women of our rare bleeding disorders community (see pg 19). We conducted our
joint advocacy visit with the European Association for Haemophilia and Allied Disorders (EAHAD) and
the World Federation of Hemophilia (WFH) in Latvia and Estonia (see pgs 55 and 57). We launched our
third ‘Haemophilia Care in Europe’ survey and, last but certainly not least, we worked with the talented
and internationally acclaimed director/producer Goran Kapetanovic on a documentary that movingly
captures the human dimension behind haemophilia (pg 63) – more on that project to come in 2016.
Elections and appointments
We were pleased to co-opt Michael van der Linde from the Dutch NMO unto the Steering Committee
and see the appointments of Ivan Šebest and Aleksandra Ilijin from the Slovakian and Serbian NMOs,
respectively, to the Youth Committee (see pg 36). Equally, we are pleased to announce the formation
of our Inhibitor Working Group and welcome onto it new volunteers Mirko Jokic, Hannele Kareranta,
Dr Oleksandra Stasyshin, Christina Burgess, Carl Fredrik Gustafsson and Elisabeth Olesen from the
Serbian, Finnish, Ukrainian, UK, Swedish and Danish NMOs, respectively, who will work alongside
ongoing volunteer Miguel Crato, President of the Portuguese NMO, and our Steering Committee and
Medical Advisory Group members to roll out the inhibitor programme over the next few years. Finally,
at the Annual Conference in Belgrade, outgoing President Brian O Mahony was re-elected as President
for the next four years.
Staff changes
We are pleased to announce some staff changes for 2016. In the first part of the New Year, longstanding
office administrator Jo Eerens will gradually transition into the new position of Membership