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

Educational Forum

Information about each year’s upcoming Ed Forum can be found here. Presentations from past Ed Forums can be found here.

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

IWMF- Connect and the online forums

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.

Physicians Directory

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

Patient Database

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

FUND RAISING TARGET COMPLETED.

December 9, 2021December 9, 2021

Very excited to report that the $150,000 target has been achieved and the IWMF Roadmap Project will receive the funding as per their agreement with the Leukaemia Foundation. We are very grateful to all the people who donated and we can all be proud to be part of a project that looking very deep into WM and hopefully will lead to further & better treatments. We also wish to acknowledge the assistance of the Leukaemia Foundation in first of all entering into the agreement with the IWMF and helping us with the Donation Page. Should you wish to donate, you can still donate to assist WMozzies by clicking on the donate button on the home page.

New treatment for Waldenström’s macroglobulinemia now available

October 28, 2021October 28, 2021

A new treatment for Waldenström's macroglobulinemia (WM) has been approved by the Therapeutic Goods Administration for adult patients who have received at least one prior therapy, or in first line treatment for patients unsuitable for chemo-immunotherapy, and also for adult patients with mantle cell lymphoma. BRUKINSA (zanubrutinib) was developed by BeiGene, a global, science-driven biotechnology company focused on developing innovative and affordable medicines to improve treatment outcomes and access for patients worldwide. WMozzies was proud to be invited by the Pharmaceutical Benefits Advisory Committee (PBAC) to take part in a pilot program as consumer advocates in the BRUKINSA PBAC decision process. WM patients will have immediate free of charge access to BRUKINSA through a BeiGene sponsored Pre-Reimbursement Access Program until such time that WM is listed for reimbursement on the Pharmaceutical Benefits Scheme. In a first for the PBAC, BeiGene expects to enter a facilitated resolution pathway in order to seek a listing date for WM. What is BRUKINSA? BRUKINSA is a small molecule inhibitor of Bruton’s tyrosine kinase (BTK) discovered by BeiGene scientists that is currently being evaluated globally in a broad clinical program as a monotherapy and in combination with other therapies to treat various B-cell malignancies. Because new BTK is continuously synthesised, BRUKINSA was specifically designed to deliver complete and sustained inhibition of the BTK protein by optimising bioavailability, half-life, and selectivity. With differentiated pharmacokinetics compared to other approved BTK inhibitors, BRUKINSA has been demonstrated to inhibit the proliferation of malignant B cells within a number of disease relevant tissues. For more information, see Products | BeiGene

WhiMSICAL Registry’s important publication

June 16, 2021June 16, 2021

The WhiMSICAL Registry’s publication of patient-entered data in the prestigious medical journal, American Journal of Hematology, presents important research for all WM patients. It has added to the field of WM Research by capturing real world WM treatment and quality of life outcomes. Congratulations to all WM patients who have entered their data into the WhiMSICAL Registry, and now published at American Journal of Hematology ajh.26173. More Registry participants are needed to strengthen the results. A further submission is planned to the 2021 American Society of Hematology Conference. This is to include updated details from existing and from new participants received by the deadline of 12^th July. The WhiMSICAL Registry, built through a patient-clinician investigator partnership, is a global database for WM patients to enter their own data. Key findings include:

Longest time to next treatment after 1^st line therapy - in patients treated with bendamustine rituximab
Better quality of life in those on Bruton tyrosine kinase inhibitors compared to recent chemotherapy.

Over 450 patients from 19 countries contributed to this first global registry for WM. Highlights of the study so far include:

Little consistency in 1^st line therapy choice globally, with 46 different types of therapies given!
USA patients commence their 1^st therapy almost 3 times faster than the rest of the world.
1^st line bendamustine rituximab has outperformed the Bruton tyrosine kinase inhibitors (BTKi, e.g., ibrutinib, zanubrutinib) and rituximab alone in time to next treatment. The findings are preliminary, however, without exact matching of the groups. More participants, and longer follow-up of existing participants are needed to confirm these exciting preliminary results.
Patients on BTKi report better quality of life scores than those who recently received other treatments.

COVID-19 vaccines are now rolling out globally. WM patients may achieve impaired vaccine responses due to their condition and treatment. To help assess the impact of COVID on patients with WM, the WhiMSICAL Registry has included a question (at question 19) on COVID-19 testing, infection and vaccination. Please contribute to this important and urgent research question for WM patients. From anywhere in the world, you can join the WhiMSICAL Registry by registering and completing consent at www.cart-wheel.org, and then filling out the questionnaire. Some data is always better than no data. Your answers can, and are recommended to be, continually updated. Please note that it does not all need to be done in one sitting; you can enter as much (or as little) as you are able to provide each time to access the Registry. (Naturally, the more data that is collected, the better the outcomes for further research.) For those already participating in WhiMSICAL, thank you for contributing your patient voice to peer-reviewed research. Please continue to update your data at www.cart-wheel.org, making sure to complete the newly added COVID-19 questions and update any changes to your treatment (question 9) and quality of life (questions 20 and 21). We need your help to provide “big data” to increase the power of this research by increasing the number of participants. Together, we can help answer some important questions in WM research as we search for a cure. For further information on WhiMSICAL Registry, click here WhiMSICAL Registry and Frequently Asked Questions or contact [email protected].

WMozzies information flyer

September 13, 2017September 13, 2017

WMozzies information flyer

The new WMozzies flyer is now available. It provides information about WMozzies and the support services provided to Waldenström's Macroglobulinemia patients throughout Australia. It is produced in a 3 column double sided fold-out format as shown below.