Waldenstrom macroglobulinemia Frequently Asked Questions

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

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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
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  Lymphom Selbsthilfe

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

  Contact Lymphom Selbsthilfe
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  CMP-Vlaanderen

  Belgian contact group for Dutch speaking Waldenström patients

  Contact CMP-Vlaanderen
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  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
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  Finnish WM Support Group

  Email contact: veikko.hoikkala@dnainternet.net
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  Waldenström France

  Par courrier, adressé à : Waldenström France 2 rue Hernandes de Heredia 84000 AVIGNON Par téléphone : + 33 (0)4 90 87 09 30 (Michel) Par mail : contact@waldenstromfrance.org Sur le site Internet : www.waldenstromfrance.org Vous pourrez prendre contact avec d’autres patients, par téléphone, courrier ou par l’intermédiaire d’une liste de conversation (forum privé) sur l’Internet où vous pouvez vous inscrire dès maintenant : http://www.medicalistes.org/waldenstrom

  Contact Waldenström France
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  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
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  Agalia-zo Greece

  Contact Agalia-zo Greece
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  WM Ireland Support Group

  Email contact: sheilathomsonmail@gmail.com
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  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
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  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
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  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
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  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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  3rd International Patient Forum on WM

  Updated agenda and registration form

  Author/Foundation: WM patient groups

  Year of publication: 2012, English

  Download
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  3rd International WM Forum - New Year Newsletter

  This is an update on the Third WM International Patient Forum in London on 11th March, following on from the successful Stockholm and Venice meetings. The event is being hosted by WMUK and generously sponsored by the IWMF and the EWM network .

  Author/Foundation: WMUK, Rodger Brown

  Year of publication: 2012, English

  Download
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  International Waldenstrom’s Macroglobulinemia Foundation Newsletter Volume 13.1

  This publication is designed to provide information about the disease Waldenstrom’s macroglobulinemia. It is distributed as a member service by the International Waldenstrom’s Macroglobulinemia Foundation, Inc., to those who seek information on Waldenstrom’s macroglobulinemia with the understanding that the Foundation is not engaged in rendering medical advice or other professional medical services.

  Author/Foundation: IWMF

  Year of publication: 2012, English

  Download
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  l’Association Waldenström France plaquette d’information

  La plaquette d’information éditée par l’Association Waldenström France a été conçue et réalisée par les membres du bureau de l’association, validée par des experts, à l’attention de toutes les personnes atteintes de la Macroglobulinémie de Waldenström ainsi qu’à leur entourage. Elle est destinée à être distribuée au plus grand nombre, dans tous les hôpitaux de France, services d’hématologie mais aussi cliniques, centres de soins, médecins généralistes et spécialistes, etc… Cette plaquette donne un résumé concis, clair et précis de ce qu’est la Macroglobulinémie de Waldenström et permet à celui qui l’a entre les mains de savoir qu’il existe une association de malades atteints par cette pathologie rare et comment rejoindre cette association. Vous pouvez nous aider à la diffusion de cette plaquette autour de vous. Il vous suffit pour cela d’en demander des exemplaires en vous adressant au siège de l’association : Waldenström France 2, Rue Hernandes de Heredia 84000 Avignon France Nous vous ferons parvenir ces plaquettes dans les plus brefs délais ! Merci pour votre aide.

  Author/Foundation: Waldenstrom France

  Year of publication: 2012, French

  Download
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  EWM Network Annual Report 2011

  Author/Foundation: EWM Network

  Year of publication: 2012, English

  Download

Waldenstrom macroglobulinemia Articles

Most recent articles:

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Waldenstrom macroglobulinemia Events

Most recent events:

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• May 2012

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  6th European Conference on Rare Diseases & Orphan Products (ECRD 2012)

  From 23 to 25 May 2012

  MCE Conference Centre in Brussels, Belgium

  More info

• June 2012

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  2012 IWMF Educational Forum

  From 1 to 3 June 2012

  June 1 - 3, 2012, in Philadelphia, PA, at: Philadelphia Airport Marriott One Arrivals Road Terminal B Philadelphia, PA 19153 Phone: 215-492-9000, or toll free 1-800-682-4087

  More info
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  IWMF Ed Forum

  From 1 to 3 June 2012

  Philadelphia, PA IWMF's annual Educational Forum is a unique opportunity for patients and caregivers to learn about our disease from specialists in Waldenstrom’s macroglobulinemia (WM) who are involved in many areas of clinical practice and research. Held in a different part of the United States every year, the “Ed Forum” offers something for everyone, no matter what your experience or level of knowledge.

  More info
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  European Human Genetics Conference 2012

  From 23 to 26 June 2012

  Its aims are to promote research in basic and applied human and medical genetics, to ensure high standards in clinical practice and to facilitate contacts between all persons who share these aims, particularly those working in Europe. The Society will encourage and seek to integrate research and its translation into clinical benefits and professional and public education in all areas of human genetics.

  More info

• November 2012

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  62nd Annual Meeting of the American Society of Human Genetics (ASHG)

  From 6 to 9 November 2012

  "We have 24 invited slots available and anticipate receiving over 120 proposals. We encourage you to provide as much information as possible in order to assist the Program Committee in their decision making. The ASHG 2012 Program Committee encourages the submission of debate or panel style sessions on thought-provoking or controversial topics."

  More info