NEW (See also more news about congresses on the page “News”)
Gene Mutation Responsible for WM identidied by Dana-Farber Researchers
Exciting news! Researchers at Dana-Farber Cancer Institute have identified the first gene mutation that may characterize the vast majority of Waldenstrom's macroglobulinemia (WM) cases.
For more information click here for the page "News".
3rd International Patient Forum on WM, London, Sunday 11th March2012.
WMUK organized and the IWMF and EWMnetwork jointly supported this Forum.
You can download Dr. Steve Treon's Powerpoint Presentation on the Genetic Basis and Therapy of Waldenstrom Macroglobulinemia and also other information and pictures of the Forum on http://www.wmuk.org.uk
New European Commission proposal would give patients faster access to medicines. More information on page "News"
7th International Workshop on Waldenström's Macroglobulinemia, Newport, Rhode Island this coming August 23-26, 2012. Click here for more information at the page “News”
Newsletter March 2012 with information on the EWMnetwork affiliates meeting and the 3rd International Patient Forum on WM, London 10-11 March 2012: click here
Impressions of EWMnetwork Affiliates’ Meeting – London 10 March 2012
(Phil Manning, moderator Waldenstrom online community, see below)
No fewer than 10 countries were represented at the meeting of EWMnetwork affiliates that took place at The Royal Society of Medicine in advance of the 3rd International Patient Forum, organised by WMUK, that was due to take place the following day.
For the complete account click here for the page "News".
The next Symposium on WM in the Netherlands ( Dutch speaking) will take place on 13 April 2013 in “de Reehorst”, Ede.
WM Community is on line !!
This is the link to find the site http://www.rarediseasecommunities.org/en/community/waldenstrm-macroglobulinemia . Here you can learn more about WM, discuss with other patients and find information and resources. We hope you can find your way and like it.
Annual report 2011
see page "Annual Report"
Patient Support
In order to support and stimulate the development of WM Patient Support Groups in the various European countries, we opened a new page “Patient Support” on this website with the items:
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How to start a patient support group
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An online Waldenström social network and forum
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Getting the most from your doctors appointment
Waldenström's Macroglobulinemia (WM)
Waldenström's Macroglobulinemia is a rare form of blood cancer. It affects plasma cells in the lymph nodes and the bone marrow. In WM abnormal plasma cells multiply out of control and produce excessive amounts of antibodies called macroglobulins or IgM. 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.
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 via “Treatment of Waldenström Macroglobulinemia” in this website.
More detailed information about WM and WM patient support organisations you can find via "Useful addresses" in this website.
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
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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.