Services provided by the IWMF for WMozzies
- To meet the needs of patients, caregivers, and families touched by WM.
- To be the place where people can learn from others affected by the disease, gain important knowledge about resources for help, and learn about advances in medicine and treatments.
- To help you understand and cope with the illness so that you know that you are not alone.
- To connect you to IWMF members around the world who understand and share experiences.
- To connect on a one-on-one basis with someone who understands and is living with WM.
- To assist If you should need a second medical opinion for your illness,
- To share WM patient stories.
Links to the IWMF website are provided below giving further details of the IWMF services available to WMozzies
IWMF Educational Materials
Publications are written by medical professionals cover many aspects of WM, including medical and blood tests, diagnosis and treatment options. These publications are directed to laypersons, and they are revised continually as our knowledge of WM advances. Download these publications directly from the IWMF website here.
The IWMF Library contains a wealth of information from presentations, publications, and webpages that address WM biology and treatment. Also included are selected video presentations from IWMF Educational Forums, and access to information from International WM Workshops.
Quarterly Newsletter – the Torch
The free newsletter, the Torch, is published quarterly and each issue keeps you informed about the progress being made in the fight against WM, as well as research activities, treatments, IWMF events and programs. The Torch can be viewed and printed directly from the IWMF web site
The IWMF sponsors a friendly Internet-based group discussion forum in English called IWMF-Connect, where you can communicate with others, share experiences and insights, exchange information and get emotional support. The discussions typically focus on WM diagnosis, treatments, research, prognosis, side effects and related conditions. In addition, other important information is conveyed about patient advocacy, outreach to doctors, concerns of the newly diagnosed, information about IWMF’s research and educational activities.
Members post their message or question to IWMF-Talk. These are then automatically distributed to all IWMF-Talk participants, via e-mail, usually within hours, if not minutes. Members can reply to the e-mail originator or to the entire IWMF-Connect list. There are typically 20-30 messages per day.
You can join IWMF-Connect by using the online form on this website.
LIFELINE and One-on-One Support
The IWMF LIFELINE can be found here.
For many cancers early detection and treatment are important to one’s survival. However, WM often offers patients the luxury of time – time to find a local haematologist-oncologist who can provide your on-going care; and if need be, time to get a consultation, as a second opinion, with an haematologist-oncologist who is an expert on WM. IWMF provides a Physician Directory. All the physicians including Australians in the IWMF have agreed to be included in the directory for consultation to patients, as well as other physicians. The IWMF does not in any way endorse the individuals listed in the Physician Directory, nor does the IWMF verify their medical qualifications. Also, please note that it is impossible to list every physician/researcher with extensive knowledge of WM in every country. The IWMF Physician Directory is intended to serve as a guide for WM patients and caregivers and for the medical professionals who treat them.
In Australia WMozzies does not publish a local directory. The Australian haematology profession prefers, for referrals, that haematologists and patients contact multidisciplinary haematology centres to identify a WM haematologist willing and able to provide a consultation for a patient with WM. Cancer Referrals Network provides referral information on cancer services In NSW and ACT including Multidisciplinary Centres offering Haematology consultations
The Patient Database (PDB) is an Internet based database which contains the active medical history of participating WM patients to help them document and track their disease. The individual information in the database is available only to the individual patient who submits it. To use the database go to Participate in Patient Registries – IWMF
Stories of Hope
The IWMF inspirational and candid Stories of Hope express in patients’ and caregivers’ own words how they have experienced living with Waldenström’s Macroglobulinemia and its effects on their health, career, family, and quality of life. The stories describe how they have met and overcome the challenges of WM, how their priorities have changed, and what they have learned. The stories also touch on how their spirits have been sustained or elevated through caring, quality medical care and the promise of research that increases understanding of the disease and accelerates the arrival of a potential cure. Read, enjoy, and learn from the following first-person stories by patients and caregivers, worldwide, affected by WM.
Join the IWMF
WMozzies are invited to become a member of the IWMF. Members receive the Foundation’s quarterly newsletter, the Torch, and other electronic bulletins of special significance to update on new information and events. You can join online here