Services 

The IWMF exists only to serve our members. All of us involved with the Foundation are volunteers, and almost all of us are also WM patients. This is clearly a bootstrap organization, and unless we do it, the "it" doesn't get done. The Foundation is barely thirteen years old, and in that time we have come a long way. The services we now provide are the beginning, a glimpse of what kinds of things we can do with resources and energy.

All of the services you read about below were started and are maintained by our dedicated volunteers. We are eager to develop more extensive offerings and expand our services to patients, caregivers, families, physicians, researchers, and the entire community of those concerned and involved with this rare disease.

In your communications with our volunteers, most of whom are dealing with the same disease you have, please let them know that you appreciate their assistance and involvement.  When you feel ready and able, join our efforts to make a difference by joining, contributing, and volunteering to help the IWMF.


IWMF Member Services

 

The mission and purpose of the IWMF was initially conceived to provide encouragement and support to patients with Waldenstrom’s macroglobulinemia (WM) and their families, and Member Services continue to be the major focus of the foundation. 

 

The IWMF Member Services Program seeks to fulfill this mandate by providing the WM community with educational resources relevant to WM and by facilitating open communications between members and interested individuals.

 

Currently offered member services are listed below:


 

IWMF Annual Educational Forum

 

The popular IWMF “Ed” Forum is held each spring in the United States. The choice of location is predicated on accessibility to as many WM patients as possible, and is currently rotated between different geographical areas of the United States (for example: Las Vegas 2002, Richmond, VA 2003, Chicago 2004, Tampa 2005, Seattle 2006, Atlanta 2007, and Los Angeles 2008). The Ed Forum is attended by approximately 300 patients and caregivers and features educational presentations from prominent clinicians, allied health professionals, and researchers in the field of WM. The latest treatment therapies and research findings are presented annually. The Ed Forum also provides a “homecoming” venue for returning Ed Forum attendees.   (Annual Educational Forum) 
 


Publications

 

  1. Newsletter and Bulletins

The quarterly newsletter, the IWMF Torch, and special issue Bulletins are mailed to over 3,000 patients and caregivers and approximately 800 medical professionals in the world. The “Torch” contains articles of general interest as well as a list of resources for WM patients and caregivers. Back issues of the Torch and special Bulletins are available for viewing and download on this website.  
(Quarterly Newsletter - IWMF Torch)


     2.   Booklets

 

Special interest booklets are available in hard copy form by contacting the IWMF. These include:

  • Living with Waldenstrom’s Macroglobulinemia (our handout leaflet)
  • Waldenstrom’s Macroglobulinemia Treatment Options (revision in late 2007)
  • Waldenstrom’s Macroglobulinemia Questions and Answers
  • Waldenstrom’s Macroglobulinemia Review of Therapy (revision in late 2007)
  • Reports from the Second and Third International Workshops on Waldenstrom’s Macroglobulinemia
  • An Introduction to Basic Immunology in Waldenstrom’s Macroglobulinemia 
  • Medical Tests in Waldenstrom’s Macroglobulinemia & Comprehensive Glossary of Selected Terms in Waldenstrom’s Macroglobulinemia  
  • Healthy Living with WM 
  • Report from the Fourth International Workshop on Waldenstrom’s Macroglobulinemia (available in late 2007)

The IWMF also makes available to all interested individuals various selected booklets from other cancer organizations, such as the booklet “Taking Part in Clinical Trials – What Cancer Patients Need to Know,” from the National Institutes of Health, National Cancer Institute. Contact the IWMF office for a list of available booklets from this and other organizations or access links to these organizations from this website.

(Resources) 
 

 

Patient Support

 

  1. IWMF-Talk: A very popular and supportive internet list-serve which provides 24-hour interactive communications among patients and caregivers. Open to all following a brief registration process, this talklist is a valuable forum for discussions on diagnosis, treatment, survivorship, and a host of other issues relevant to the WM community. The Talklist also contains an archival feature which functions as a layperson’s reference source for many topics particular to WM.  (IWMF-Talk )
     
  2. WM Support Groups: Well-organized patient support groups throughout the United States and in numerous countries around the world which meet regularly.  A must for the newly diagnosed and veteran Waldenstrom’s macroglobulinemia patient. (Local Support Groups)

 

  1. IWMF Lifeline: The Lifeline is a list of available telephone volunteers organized for patients and caregivers around specific symptoms, treatments, and other topics.  This gives patients the opportunity to speak with another patient who has substantial experience with a particular issue surrounding diagnosis, treatment, and survivorship with Waldenstrom’s macroglobulinemia. Selected topics include newly diagnosed, clinical trials, social security disability, treatment options, and many more.  (IWMF Telephone Lifeline)