The Waldenstrom’s Weekly

February 18, 2022

Volume 2, Issue 6

The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is dedicated to supporting and educating everyone affected by WM while advancing the search for a cure. The IWMF provides access to The Waldenstrom’s Weekly as a free service to WM community members to share WM related news and events. For more information, please contact


Lymphoma Coalition Launches the 8th Global Patient Survey on Lymphoma & CLL

world cancer day

After the first week, Lymphoma Coalition has shared that the WM community has had 202 respondents,
which is about 12% of the responses thus far.
Let’s keep those numbers increasing!

Patients and caregivers around the world are invited to share their experiences and insights to improve lymphoma care
Lymphoma Coalition has launched its 2022 Global Patient Survey on Lymphoma & CLL. The international survey is conducted every two years and aims to deeply understand the patient and caregiver experience as well as uncover trends, themes and geographic variation. Specifically in 2022, the survey will explore how patients and caregivers participate in care. In the past, the WM community has led the way in responding to the survey. So much so, that they were able to provide WM-specific details for us. Let’s do it again, so that we show other folks the importance of participating in such efforts, and so that we can continue to see results specific to our disease.
 The survey is now open. All people aged 18 and over living with lymphoma, including WM, and caregivers are also encouraged to participate. It is available in 19 languages. The patient survey takes approximately 25 – 30 minutes to complete and the caregiver survey can be completed in 15 – 20 minutes. It will close in two months.
“This survey is unique in that it gathers data from lymphoma patients around the world, and enables researchers to analyze data specific to various types of lymphoma, including WM, and also enables them to compare results across the various types of lymphoma. Our participation is especially critical to helping researchers better understand the WM patient experience, and in turn, find better ways to treat our disease,” says Peter DeNardis, Chair of the IWMF Board of Trustees.
Furthermore, as more people in each country around the world participate, the IWMF also learns more about the patient and caregiver experience in each country and this information can be used to help ensure activities and programs meet patients’ needs.
Lymphoma Coalition is a worldwide network of lymphoma patient organisations that acts as a central hub for reliable and current information. This is the 8th Global Patient Survey on Lymphoma & CLL, which is done biennially. In 2020, nearly 12,000 participated from around the world. Find out more about the current and past surveys here.

BeiGene Announces Approval for Brukinsa (zanubrutinib) by Swissmedic for

Treatment of WM

Swissmedic (the Swiss surveillance authority for medicines and medical devices) has approved Brukinsa (zanubrutinib) for the treatment of adult patients with Waldenström’s macroglobulinemia (WM) who have received at least one prior line of therapy, or for treatment-naïve patients who are not suited for standard chemo-immunotherapy. Read more about it here.

US FDA Approves First Treatment for
Cold Agglutinin Disease

A small percentage of WM patients may suffer from Cold Agglutinin Disease (CAD) at some point during their disease course. The US FDA has now approved Enjaymo™ (sutimlimab-jome), the first treatment that’s ever been made available for the disease. Read more about the treatment here.

You can learn more about CAD and rare complications of WM here.



The LLS-IWMF Living Well with WM

Free Virtual Program

February 23, 2022 at 6:30PM U.S. ET

cancercare logo

A Virtual Educational Conference for Patients, Caregivers and Healthcare Professionals

Wednesday, February 23, 2022
6:30PM – 8:30PM U.S. Eastern Time

This program is designed to provide attendees with essential information that will help you participate more actively and confidently in decisions about your WM treatment and survivorship.

Waldenström Macroglobulinemia (WM) patients, caregivers, family and friends will gain a better understanding of:

  • WM treatment, including standard care and clinical trials
  • Strategies to make informed decisions about treatment
  • Tips for communicating with your health care team
  • Strategies to manage disease and treatment side effects
  • The impact of COVID-19 and vaccinations 
  • Strategies for managing ongoing cancer survivorship issues, including financial and employment challenges, as well as psychosocial issues
  • Resources available in your local community, at cancer centers, and those provided by LLS


cancercare logo


WMUK Webinar
Physio for Peripheral Neuropathy
Thursday, March 3rd at 6:00PM GMT

2021 WMUK Patient-Doctor Summit

WMUK will be joined by Dr. Gita Ramdharry, a Consultant Allied Health Professional in Neuromuscular Diseases and researcher at UCL Institute of Neurology, to discuss living with Peripheral Neuropathy (PN). She will be offering guidance from a physiotherapist’s standpoint on coping and living better with PN.

If you have any questions for Dr Ramdharry, please submit them to WMUK in advance by emailing

*Please note the Greenwich Mean Time (GMT) time zone

Become More Tech-Savvy with
PEN’s Digitally EmpoweredTM Online Course

Support Group

Digitally Empowered™ is a free and easy-to-complete course that develops the skills necessary to harness online health resources, including telehealth.  

Requiring less than 90 minutes to complete, and available in English and Spanish, Digitally Empowered™ helps less-digitally-savvy older cancer patients learn to research their diagnosis, navigate telehealth, and forge beneficial connections to others in the cancer community. Become digitally empowered today!”  

cellectar new ad

This is a paid clinical trial advertisement

Thanks to You!

The IWMF is able to offer our education, information and support programs free of charge, thanks to the generosity of WM community members like you.
Please consider a gift of support by clicking below.

Sign-up for the Waldenstrom’s Weekly and get it emailed directly to your inbox!