Waldenström's Macroglobulinemia (WM)
Waldenström's Macroglobulinemia is a rare, slow-growing cancer of the blood. It is also named lymphoplasmacytoid lymphoma. WM causes overproduction of a protein, called monoclonal immunoglobulin M (IgM or "macroglobulin") antibody. Excess IgM in the blood causes hyperviscosity (thickening) of the blood. This can be the cause of various symptoms. Some patients however do not experience symptoms. In 1944 the Swedish Dr. Jan Waldenström was the first to describe the disease. About 1 in 200.00 people get diagnosed WM.
WM is a serious disease, but slow moving. Most treatments are directed at symptoms. Waldenström's Macroglobulinemia is classified as an "orphan" disease. Orphan diseases are so rare that few, if any funds are available for research. Current treatment options for WM are based on research into similar disorders, such as chronic lymphocytic leukemia and multiple myeloma.
More information about treatment of WM you can find at “Treatment” in this website.
More detailed information about WM and WM patient support organisations you can find via "Useful addresses" in this website.
Why EWMnetwork ?
Waldenström´s Macroglobulinemia (WM) is a very rare disease, so co-operation between the WM patient support organisations in different European countries is very important to make the voice of WM patients heard in European politics and health institutions/ organisations.
EWMnetwork is an umbrella organisation for European WM patient support groups or patient support organisations.
EWMnetwork was initiated in 2008 by the Dutch MM&WM Patient Association (CMWP), The Netherlands and is registered as a not-for-profit organisation under Dutch Law.
EWMnetwork aims to represent the interests of WM patients on a European level. It is an organisation run by patients and their relatives for patients (“Patients for Patients”).
EWMnetwork emphasizes on
accessibility to treatment and medication,
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accessibility to information on new and current trials,
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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.
EWMnetwork is still a young organisation. Started in 2008, there are contacts now in 11 countries: Belgium, Denmark, Finland, France, Germany, Greece, Ireland, The Netherlands, Sweden, Switzerland and UK.
All WM patient support organisations in Europe ( or groups or individuals if there is not yet a patient support organisation in their country) are invited to become an affiliate of EWMnetwork. There are no costs to it.
New::
- Dutch Guideline for diagnosis and treatment of WM and A survey on diagnostic methods and treatment strategies used in patients with WM in the Netherlands (2013): see Treatment
- EWMnetwork meeting 16-03-2013, London: impression and presentations: see Newsletter May 2013
- International Patient Forum on WM 17-03-2013, London: impression, summary and presentations: see Newsletter May 2013
- Symposium on WM in the Netherlands 13-4-2013:An impression by Marlies Oom: see News, information of past congresses
- EWMnetwork's Annual Report 2012: see Newsletter, Annual Report
Coming events:
- IWMF Ed Forum, San Diego, Ca, 17-19 May 2013. For more www.iwmf.com.
- Annual meeting of the Waldenström France Association, Paris, 28 September 2013. This meeting will be held at the Plateforme Maladies Rares, Hôpital Broessais, 102, rue Didot, 75014. The speaker will be Dr. Véronique Leblond. For progam details and registration information, please contact waldenstromfrance@live.fr or phone +33 0 490 870 930
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