Umbrella Organization of European Waldenström patient supportgroups and patients

European
WALDENSTRÖM'S
MACROGLOBULINEMIA
network

What is 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 200.000 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.

BLOOD: Bing Center publishes study detailing the genomic landscape of WM.
Publication in BLOOD, Journal of the American Society of Hematology, december 23. 2013:
Hunter, et al.:The genomic landscape of Waldenstöm's Macroglobulinemia is characterized by highly recurring MYD88 and WHIM-like CXCR4 mutations, and small somatic deletions associated with B-cell lymphomagenesis Blood blood-2013-09-525808:
Summery:This historic publication details the genomic landscape of WM, including the
discovery of the MYD88 L265P and CXCR4 WHIM mutations, and other important
structural mutations which likely help cooperate with MYD88 and CXCR4
mutations to drive WM growth. This is a major landmark publication for WM,
and will help drive research for years to come into the cause and cure of
WM. We are grateful to Dr. Peter S. Bing, the International Waldenström's
Macroglobulinemia Foundation, the Coyote Fund for WM, the D'Amato Family
Fund for Genomic Discovery, the Edward and Linda Nelson Fund for WM
Research, and the WM patients who provided their samples that made this
major advance possible. Please feel free to pass the link to others within
the WM community.
Full Text: http://bloodjournal.hematologylibrary.org/content/early/2013/12/23/blood-2013-09-525808.long This item requires a subscription to Blood.

AMERICA CANCER SOCIETY
More information and a good summary of current understanding:
http://www.cancer.org/acs/groups/cid/documents/webcontent/003148-pdf.pdf

ORPHANET
More information about Waldenström's Macroglobulinemia / Lymphoplasmacytic lymphoma:
Some recent treatment options you can find at "Treatment Options"

For more general information see also www.iwmf.com and www.bingcenterforwm.org.

This is a website under permanent construction made by WM patients for WM patients.We will add new information in due time.
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