ECPC's member of the month February 2010 is:

MARLIES OOM - European Waldenström Macroglobulinemia network: EWMnetwork

My Organisation

WALDENSTRÖM  MACRGLOBULINEMIA (WM) is a bloodcancer, a rare form of Non-Hodgkin Lymphoma. THE EUROPEAN WALDENSTRÖM MACROGLOBULINEMIA network (EWMnetwork) is an umbrella organisation for Waldenström patient support groups in Europe. EWMnetwork was initiated in 2008 by the Dutch MM&WM Patient Association (CKP), The Netherlands and is registered as a not-for-profit organisation under Dutch Law.

THE MISSION of EWMnetwork is to enable WM patients to represent their interests at a European level: patients for patients. EWMnetwork is a non-profit organisation. The board consists of patients and caregivers of WM patients. EWMnetwork has contacts now in eleven European countries.

THE OBJECTIVES of EWMnetwork are to represent the interests of WM patients,

• accessibility to treatment and medication,

• accessibility to information on new and current trials,

• stimulating research into new methods of treatment and medication.

Contacts and exchange of information between WM patient support organisations within and outside Europe are very important for realizing the objects.

YOU CAN JOIN EWMnetwork either as a national/regional WM patient support group, or as an organisation representing the interests of NON-HODGKIN LYMPHOMA patients (including WM patients), or, if there is no such organisation in your country, as an individual.

My story

My husband was diagnosed with WM in 1998. He joined the  Dutch WM patient organisation and became active as a contacperson for the southern part of the Netherlands. In 2006 he got an allogenic stemcell transplantation, so far with good results. In 2008 I got involved in the initiative of several WM patients and caregivers of WM patients to start a European network, as an umbrella organisation for WM patient support groups in Europe. Since June 2009 I'm secretary of EWMnetwork.

How to contact me

email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

website: http://www.ewmnetwork.eu and http://www.waldenstrom.eu

See also our previous ECPC Members of the Month.