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Waldenström's Macroglobulinemia
EWMnetwork


EWMnetwork:
Mission, Aims

EWMnetwork:
Board, Medical Advisory Board, Affiliates

EWMnetwork:
Annual report

Partners

Treatment

Clinical Trials

Useful addresses

Patient Support

News

Contact information

 

 



ANNUAL  REPORT 2011          

European Waldenström Macroglobulinemia network in brief

The Foundation “ Stichting EWMnetwork” (www.ewmnetwork.eu) has been active since 2009.
EWMnetwork is an umbrella organization for national and regional WM patient support groups. The mission is to enable patients with Waldenström’s Macroglobulinemia (WM) to represent their interests at a European level. EWMnetwork gives WM patients a voice within relevant European political and healthcare organizations.
In 2011 EWMnetwork counts eight affiliates representing a WM patient organization (in Belgium, Denmark, Finland, France, Greece, Ireland, The Netherlands, UK) and two  individual affiliates (in Norway and Switzerland). There are contacts with Germany and Sweden. Some of the WM patient  organizations are very well organized and active, some are just starting.
For health reasons Joanna Van Reyn had to give up her membership of the board of EWMnetwork in the course of 2011. We are very grateful to her  for all the work she has done, for her enthusiasm and her perseverance.  Fortunately she still continues her activities for the WM patients in Belgium and as one of the moderators of the on line WM community ( for French language).
Board members in 2011: Lia van Ginneken, chair a.i., The Netherlands; Marlies Oom, secretary/ treasurer, The Netherlands; Veikko Hoikkala, Finland and Roger Brown, UK.
                             
                                the board

  f.l.t.r. Roger Brown, Lia van Ginneken, Marlies Oom, Veikko Hoikkala


Highlights 2011


Networking & Information:

Co-operation and partners:

Advocacy:

Conferences, meetings attended:

Newsletters:

Organization:

Board meetings:

Affiliates:

Medical Advisory Board (MAB):

WM Patient Organizations in Europe:

                                                                                              
Finances and potential funding possibilities:

Website:

 

ANNUAL  REPORT 2010

European Waldenström Macroglobulinemia network in Brief

The Foundation “ Stichting EWMnetwork” (www.ewmnetwork.eu) has been active since 2009.
The mission is to enable WM ( Waldenström Macroglobulinemia) patients to represent their interests at a European level. This way WM patients are given a voice in policy and political issues of the European health care system.
EWMnetwork has contacts with WM patient organizations in Belgium, Denmark, Finland, France, Germany, Greece, Ireland, The Netherlands, Sweden, Switzerland and UK. Some of these organizations are very well organized and active, some are just starting.
Board members in 2010: Lia van Ginneken, chair a.i.,The Netherlands; Marlies Oom, secretary/ treasurer, The Netherlands; Joanna Van Reyn, Belgium; Veikko Hoikkala, Finland and Roger Brown, UK (since October).

Highlights 2010

Networking & Information:

Co-operation and partners:

Advocacy:

Special mention here deserves  FACE ( Forum Against Cancer in Europe, www.forumagainstcancer.eu ), launched by ECPC in 2010. Already 81 MEP’s (Members of European Parliament) are committed to follow one or more issues for the term of their legislature, for example on cancer research, cross-border healthcare, rare cancers, clinical trials, palliative care, young people and cancer, etc. Several informative workshops  have been held with speakers of the Commission, the European Parliament, Research Organizations and patients.
Focus was on: inequality in the EU with respect to available medication and treatment, support for more (rare) cancer research, development of national (rare) cancer plans.

Conferences, meetings attended:

Attending these conferences/ meetings appeared to be very useful again for networking and information.

 

Venice 1

2010 6th International workshop on WM,
Venice 2010

 

2nd European WM Patient Forum, IWMF, Venice

Newsletters:

 

Organization:

Affiliates:

WM Patient Organizations in Europe:

Medical Advisory Board (MAB):

The board of EWMnetwork met with three members of the MAB, who participated actively in the 6th International Workshop on WM in Venice. Members of the MAB make WM patient organizations known to WM patients and other relevant stakeholders. In general the MAB provides counsel and support on relevant issues asked and unasked for. In 2010 there were no such issues.

Board meetings:

Meeting with EWMnetwork affiliates:

Venice 3
    Meeting with EWMnetwork affiliates and partners, Venice 2010

 

Strategy plan:

Finances and potential funding possibilities:

Website:

 

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