Umbrella Organization of European Waldenström patient supportgroups and patients

European
WALDENSTRÖM'S
MACROGLOBULINEMIA
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Newsletter april 2015

Go back to newsInserted on Thursday 2 April 2015
NEWSLETTER, April 2015
a short update of EWMnetwork news and activities.

changes in the board
In the board meeting on March 6th  2015 at Amsterdam Schiphol, Lia van Ginneken took leave as chair of the EWMnetwork board. The board thanked her very much for being more than six years a very energetic, stimulating and binding force within the EWMn board.
A new chair has not been appointed yet. For the time being the tasks are divided between the present  and new board members.
Two new board members were appointed by the board: Melanie Meniar, as member and Jan Trapman, as treasurer. Both are members of the Dutch patient organization Hematon/ Waldenström.
Melanie Meniar focusses her activities on patient advocacy (like Lia van Ginneken did before). For more training in this field she will attend the one-week course at the Eurordis Summerschool in June.
Jan Trapman takes the task of treasurer from Marlies and is ready for other tasks.
Marlies Oom remains secretary for the time being, but is looking for a successor (suggestions for candidates are welcome).
The functions of Roger Brown, Veikko Hoikkala and Phil Manning remained unchanged.
 
affiliates: two new affiliates, Italy and Spain
In 2015 two new WM patient support groups started, one in Italy and the other in Spain. They joined  both EWMnetwork and IWMF as affiliates. We welcomed them and offered help.
By now eleven European countries are represented by a WM patient support group (small and large ones) as affiliated member of EWMnetwork: Belgium, Denmark, Finland, France, Greece, Ireland, Italy, Spain, Switzerland, The Netherlands, UK.
In 2015 the board keeps looking for opportunities to stimulate the start of new WM patient support groups (especially in Norway, Sweden and Eastern Europe).
The board has at the moment no plans for organizing an affiliates’ meeting in 2015.
The next  Affiliates-MAB meeting will than be held in 2016, possibly in relation to the IWWM-9 in Amsterdam.
 
patient advocacy
 A EWMn board member will participate in the special Patient Advocacy Program as part of the EHA (European Hematology Association) congress in June. The topics to be discussed there with doctors and patients are “access to treatment” and “collaborating with patients on research”.
Another board member will participate in the Eurordis meeting of European Federations for Rare Diseases in October.
Of course EWMn will be watchfull of disease specific advocacy when needed for WM (e.g. Ibrutinib/ Imbruvica etc), but for relevant not specific WM advocacy, like the two EHA topics above, we have to look for partners on the European level, as for instance EHA and Eurordis.
Later this year the board will also work out what EWMn can offer in relation to the ECWM (European Consortium for WM) as a follow up of Dr. Buskes’ invitation at the Affiliates-MAB meeting in 2014.


your reactions
We would appreciate your feedback, so if you have questions or suggestions for initiatives, please mail to secretary@ewmnetwork.eu .
 
Rosmalen, April 2nd, 2015
M.E.I. Oom

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