International Waldenstrom’s Macroglobulinemia’s Foundation (IWMF)

History

WMozzies was formed as a joint initiative by Ben Rude IWMF President 2000-05 and IWMF Australian member Gareth Evans.

WMozzies is an Affiliate member of IWMF.     IWMF is based in the USA and was formed in 1998, but it beginnings started in 1994 with a 21 member email group.

The History of the IWMF is detailed at:     http://www.iwmf.com/about-us/our-history

The IWMF currently has a worldwide membership of over 7,000, with Support Groups and affiliate organisations in virtually every continent.

IWMF Support Services 

Today the IWMF:

  • Provides support to patients and their caregivers
  • Enables patients to communicate with one another
  • Sponsors WM educational forums featuring
    prominent physicians and researchers
  • Publishes booklets on WM and its treatment
  • Supports research aimed at ultimately finding a cure for WM
  • Since 1999, the IWMF has invested over $8.1 million dollars in research on our disease.

Anyone joining WMozzies is also invited to join the IWMF. Go to: http://www.iwmf.com/how-you-can-help/join-iwmf

IWMF Services

  To access the full list of services: Go to: http://www.iwmf.com/get-support

The services highlighted above can be accessed from the links within each one, or through the IWMF services link below.

IWMF services include:Torch

  • The IWMF Torch newsletter, produced 4 times a year, which you can receive in PDF format.

 

 

 

 

 

 

 

IWMF Educational Forum

To see presentations from the most recent Educational Forum

and videos of presentations from it and previous Ed Forums,click here.

 

 

 

  • The IWMF-Talk discussion forum, this is an email talk list, where all matters regarding WM are discussed amongst patients & caregivers

 

 

 

  • Various publications & booklets with much useful information about WM that can be downloaded directly from the website.

IWMF volunteers, volunteers from the IWMF Affiliates, and WM researchers have developed publications including Booklets, Treatment Guides, and Facts Sheets to provide the newly diagnosed and veteran patients, as well as their caregivers, with up-to-date information about Waldenström’s Macroglobulinemia and how to treat it.

The IWMF does not warranty the content of these publications. They are made available to you as information, and we encourage you to discuss what may be appropriate to you with your haematologist.

To download publication please click on the relevant LINK.

Basic Immunology  http://www.iwmf.com/BasicImmunology  

By Guy Sherwood, M.D. (English version updated 2014; other versions updated 2007.)
A comprehensive review of immunology as it relates to WM.

 

Glossary of Medical Terms   http://www.iwmf.com/system/files/WM_Glossary.pdf

Written & compiled by Guy Sherwood, M.D., Bret Blakeslee, Sue Herms, & Peter DeNardis, 2012.
This glossary is designed to help patients with WM learn and understand pertinent medical terms that relate to our disease.

Clinical Practice Guide for the Treatment of WM (Australia)   http://www.iwmf.com/system/files/WM_guidelines_FINAL.%20Australia.pdf

By Dipti Talaulikar, M.D., Constantine Tam, M.D., et al, 2016

This booklet is a consensus established by the Australian Medical Scientific Advisory Group, which consists of a panel of haematologists across Australia, and it is provided by  the IWMF Affiliate (WMozzies) in Australia.

Guide to WM and LPL   http://www.iwmf.com/system/files/WMUK_LPL_WM_Final_V2.pdf

By Shirley D’Sa, M.D., 2014.
This brochure is written by Dr. D’Sa, a hematologist/oncologist at University College Hospital, London, UK,  The drugs mentioned in the brochure are noted by their generic names and by their UK-specific trade names and may/may not be available in UK/US (or elsewhere) unless in the context of a clinical trial.

Medical Tests      http://www.iwmf.com/system/files/MedicalTests.pdf

By Guy Sherwood, M.D., 2007.  Revised by Sue Herms and Linda Nelson, 2016.

A reference booklet of medical terms and tests, this revision places particular emphasis on expanding the explanation of the Complete Blood Count and on Immunoglobulins. Tests for beta-2 microglobulin and light chains have been added, as has genetics testing.


Waldenstrom’s Macroglobulinemia: Questions and Answers   http://www.iwmf.com/system/files/Q%26A2017-English.pdf

Revised 2010/2014 Guy Sherwood and Sue Herms
Revised 2017 Sue Herms and Linda Nelson

Designed to address common questions about Waldenstrom’s macroglobulinemia, this booklet, including a full glossary of terms, is a detailed companion to the IWMF webpage, Frequently Asked Questions (FAQ).

Treatment Options Guides

By Guy Sherwood, M.D., 2013.
These guides review all therapies currently used to treat Waldenstrom’s macroglobulinemia. It was designed for patients with WM as a reference to aid them in preparing to participate with their physician in determining the best course of treatment.