Waldenstrom macroglobulinemia community

Here's a selection of information from patients & professionals to better understand Waldenstrom macroglobulinemia.

Waldenstrom macroglobulinemia resources

Waldenstrom macroglobulinemia Frequently Asked Questions

Here are some of the most frequently asked questions and their answers:

If you are a patient or carer with a question about living with WM, about treatments, or other relevant information please email your question to and we will put it to the specialists who have agreed to answer your questions from time to time

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What are the symptoms of Waldenström macroglobulinemia?

Some patients do not have symptoms. For those who do have symptoms, the most common ones are weakness, severe fatigue, bleeding from the nose or gums, weight loss, and bruises or other skin lesions...

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What are the possible causes of Waldenström macroglobulinemia?

The exact cause of WM is not known. However, scientists believe that genetics may play a role in WM, because the disease has been seen to run in families.

Source: Munshi NC, Anderson KC. Plasma ...

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How often does Waldenström macroglobulinemia occur?

WM is a rare cancer; about 1,500 new cases occur annually in the United States. The incidence of WM is higher in males and higher in whites than in African Americans. Incidence increases sharply wi...

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What is Waldenström macroglobulinemia?

Waldenström macroglobulinemia (WM) is a rare, indolent (slow-growing) non-Hodgkin lymphoma (cancer that begins in the cells of the immune system). WM is also called lymphoplasmacytic lymphoma. It s...

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Waldenstrom macroglobulinemia Patient Groups

These are patient organisations that have experience and expertise in Waldenstrom macroglobulinemia. They are supporters of this website. Contact them for more information on their activities.

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  • EWMnetwork

    The European Waldenström Macroglobulinemia network ( EWMnetwork) is a non-profit organization set up in 2009 with a board of European WM patients and caregivers, aiming to represent the interests of WM patients at the European Level. Membership is currently open to WM Support Groups and individuals in countries where no organized WM support group currently exists. EWMnetwork’s core aims are: -Act as an umbrella organization for WM patient support groups throughout Europe -Promote the interests of WM patients at a European Level ( European legislation) and together with other European Organizations such as the European Cancer Patient Coalition (ECPC), the European Organization for Rare Diseases (Eurordis) and the European Medicines Agency(EMA) -Ensure availability of medicines/treatments and to get orphan drug status or treatment approval for WM patients in all European countries and promote clinical trials and participating in them -Liaise and exchange information with international organizations such as the IWMF

    Contact EWMnetwork
  • Lymphom Selbsthilfe

    Die Selbsthilfe ist gekennzeichnet durch gegenseitige Unterstützung der Patienten und Angehörigen und trägt zu mehr Kompetenz und Eigenverantwortung bei.

    Contact Lymphom Selbsthilfe
  • CMP-Vlaanderen

    Belgian contact group for Dutch speaking Waldenström patients

    Contact CMP-Vlaanderen
  • LyLe Denmark

    Vi er en patientforening for personer der har eller har haft lymfekræft eller leukæmi og deres pårørende. Du støtter derfor dig selv og andre med et medlemskab.

    Contact LyLe Denmark
  • WM France

    Medicaliste: [email protected] Abonnés : 149 Gestionnaires Cyril Quémeras Nicole Bastin Nicole Bastin

    Contact WM France
  • DLH Germany

    Die Deutsche Leukämie- & Lymphom-Hilfe e.V. (DLH) ist der Bundesverband der Selbsthilfeorganisationen zur Unterstützung von Erwachsenen mit Leukämien und Lymphomen.

    Contact DLH Germany
  • Agalia-zo Greece

    Contact Agalia-zo Greece
  • CMWP Netherlands

    In 1983 is de vereniging opgericht als Contactgroep Kahler Patiënten (CKP). Het is een patiëntenvereniging van lotgenoten en andere betrokkenen, zoals partners en kinderen. In eerste instantie gericht op multipel myeloom (ziekte van Kahler). Vanaf 1990 zijn ook de Waldenström-patiënten bij de CKP aangesloten. In 2010 is de naam van de vereniging veranderd in Contactgroep Myeloom en Waldenström Patiënten (CMWP).

    Contact CMWP Netherlands
  • WM UK Support Group

    The Waldenstrom’s Macroglobulinaemia (WM) United Kingdom (UK) Support Group was officially established in 2000. We are a non-profit organisation created to support those suffering from WM as well as their family and friends in UK and Eire. Although there are only a few of us who actively devote time each day to supporting UK members, we are supported by others within our group who help our team focus on the services that our members need and offer additional support, advice and guidance when required.

    Contact WM UK Support Group
  • WMUK

    WMUK is a charitable partnership between WM patients, carers, specialist doctors and nurses. It aims to bring them closer together and to lobby for the latest and best treatments for this rare disease.

    Contact WMUK
  • The IWMF

    The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) was established in 1994 for the purpose of offering educational information and caring support to Waldenstrom’s macroglobulinemia (WM) patients. Since the year 2000 we have funded research that will lead to better treatment therapies and, we hope, eventually a cure.

    Contact The IWMF

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Waldenstrom macroglobulinemia Documents

Resources, documents and detailed informations on Waldenstrom macroglobulinemia. In this section you can download brochures, ask for printed documents or find useful links.

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Waldenstrom macroglobulinemia Articles

Most recent articles:

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NORD Rare Disease Database: Waldenstrom's macroglobulinemia (WMG) (EN)

Waldenstrom's macroglobulinemia (WMG) is a malignant disorder of the blood, closely related to lymphoma and characterized by the presence of abnormally large numbers of a particular kind of whi...

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Conference Report IMWF 16th Annual Educational Forum

At the start there was an interesting guided tour of Mayo Clinic, concentrating especially on various cancer-departments.

There were speakers from leading US Cancer-institutions: Dana-Farber , ...

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Orphanet: Waldenström macroglobulinemia (2007)

Waldenström macroglobulinemia (WM) is a B-cell lymphoproliferative disorder characterized by the accumulation of monoclonal cells in the bone marrow and peripheral lymphoid tissues, and associ...

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Waldenstrom macroglobulinemia Events

Most recent events:

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  • February 2012

  • VII International Conference on Rare Diseases and Orphan Drugs (ICORD 2012)

    From 4 to 6 February 2012

    A global meeting on international cooperation and public health policies focusing on research, diagnosis, development of and access to treatment, and care for rare diseases, will be held in Tokyo. The VII ICORD Conference will offer a platform for the exchange of perspectives for medical and healthcare professionals, patients and patients’ groups, basic and clinical researchers, policy-makers, government officers and pharmaceutical, biotechnology and medical device industries.

    More info

  • Rare Cancers Conference: Improving the Methodology of Clinical Research

    On 10 February 2012

    The European Society for Medical Oncology and Rare Cancers Europe have joined forces to present the first Conference addressing the scientific and educational needs of relevant stakeholder groups concerning challenges and potential solutions in the field of clinical research on rare cancers. The conference will take place in Brussels, Belgium.

    More info

  • National Health Policy Conference

    On 13 February 2012

    The National Health Policy Conference (NHPC) provides clarity on the nation's critical health policy issues for the upcoming year and delivers a program with insider perspectives from health policy leaders to an audience that includes researchers, policy experts, and advocates. This event is taking place in Washington, D.C.

    More info

  • 5th International Rare Disease Day 2012

    From 29 February to 1 March 2012

    February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries.On this day hundreds of patient organisations from more than 40 countries worldwide are organsing awareness-raising activities converging around the slogan “Rare but strong together”. Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand! United States participants can find more information here: http://rarediseaseday.us/

    More info

  • 1st International Congress on Research of Rare and Orphan Diseases

    From 29 February to 2 March 2012

    Gebert Rüf Stiftung and BLACKSWAN Foundation, both active in supporting research activities in the field of rare diseases, are preparing the first “International Congress on Research of Rare and Orphan Diseases – RE(ACT)” in 2012. It will take place at the Gehry Building on the Novartis Campus, Basel/Switzerland from February 29th to March 2nd 2012. A superb setting for stimulating learning, exchange and networking. The “RE(ACT) Congress 2012” will bring together world leaders and young scientists from both university and industry to present cutting edge research, to discuss results and to exchange ideas.

    More info

Waldenstrom macroglobulinemia community news

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    One on One: Peter DeNardis Pitt staffer’s efforts recognized with Jefferson Award
    News, published 3 months ago

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    And DeNardis really knows of what he speaks: In 2003 at age 43, with a wife of 20 years and kids aged 16, 14 and 7, he was diagnosed with WM and told that the disease likely would kill him in a few years.

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    WM Clinical Trials
    News, published 4 months ago

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    via Clinicaltrials.gov

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    European Organisation for Research and Treatment of Cancer
    News, published 4 months ago

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    EORTC is an international non-profit organization with a scientific goal created in 1962 by European cancer specialists, one of whom was the Belgian Professor Henri Tagnon.  

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    European Medicines Agency
    News, published 4 months ago

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    The European Medicines Agency is a decentralised agency of the European Union, located in London. The Agency is responsible for the scientific evaluation of medicines developed by pharmaceutical companies for use in the European Union.

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    European Society for Medical Oncology
    News, published 4 months ago

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    The European Society for Medical Oncology (ESMO), the leading European professional organization representing medical oncologists.

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    Rare Cancers Europe
    News, published 4 months ago

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    Rare Cancers Europe (RCE) has been established as a partnership of cooperating organisations that work together to place the issue of rare cancers firmly on the European policy agenda, to identify and promote appropriate solutions and to exchange best practice.

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    Lymphoma Coalition
    News, published 4 months ago

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    We are a global network of worldwide not for profit lymphoma patient organisations with a Vision to free the world of lymphomas. We began in 2002 with 4 countries sharing best practices and now have a membership of 53 member organisations from 38 countries.

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    IWMF
    News, published 4 months ago

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    The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) was established in 1994 for the purpose of offering educational information and caring support to Waldenstrom’s macroglobulinemia (WM) patients. Since the year 2000 we have funded research that will lead to better treatment therapies and, we hope, eventually a cure.

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    Bing Center for WM
    News, published 4 months ago

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    The Waldenstrom’s Macroglobulinemia program at Dana Farber Cancer Institute (DFCI) was founded in 1999 by Dr. Steve Treon with the help of patients,caregivers and DFCI scientists in an effort to advance our understanding of the cause of WM, and to pursue novel therapies. 

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    Waldenström's Macroglobulinemia Clinical Trials Group
    News, published 4 months ago

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    The Waldenström's Macroglobulinemia Clinical Trials Group is comprised of over 20 major cancer centers around the world.