News

The IWMF has recently announced its first-ever financial assistance program, to assist those seeking second opinions with travel and lodging costs.  According to their flyer, "in many cases, residents from outside the U.S. may be eligible".  The WMFC has no further information on what opportunities this might bring for Canadians seeking second opinions, whether from elsewhere within Canada, or from the U.S. For more information, the flyer is accessible at this link. To quote from the IWMF's announcement: Over the past year, we have been collaborating with The National Organization for Rare Disorders (NORD) on a second opinion financial assistance [...]

Every two years, the International Workshop on WM (IWWM) brings together worldwide experts to share their latest understanding of the diagnosis and treatment of WM.  It promotes "targeted research, clinical care methods, education, training, and advocacy for Waldenstrom’s macroglobulinemia". A report summarizing the presentations at the conference has been published, and is available at https://link.springer.com/article/10.1007/s12254-023-00876-3 -- click on the "Download PDF" box on the right. The chapters include summaries of presentations under the topics: New insights into BTKi treatment of Waldenström’s macroglobulinemia Management of WM patients previously exposed to BTK-inhibitors BTK inhibition in Waldenström’s macroglobulinemia: trial updates and biomarker analysis Emergent [...]

Québec has become the first province to include financial coverage for any BTK inhibitor on its provincial drug formulary.  This is excellent news for WMers in Québec.  And we hope this will set an example for other provinces (although they are quite independent from one another in making such decisions). The announced coverage is for BeiGene's Brukinsa, or zanubrutinib.  BeiGene's news release can be found here.

We often hear from the Bing Center for Waldenström's Macroglobulinemia at the Dana-Farber Cancer Institute (DFCI).  Now let's hear from the Mayo Clinic. Dr. Morie Gertz has published "WM: 2023 Update on Diagnosis, Risk Stratification, and Management", available here.  It provides an extensive overview of the literature covering : how WM is diagnosed the risk stratification for the disease the various treatment options (regimens) for WM No new research results are presented; the article is a summary of existing knowledge, and thus can be useful to those looking to refresh their knowledge about the various treatment options. Most useful to the [...]

Every year, the American Society of Hematology (ASH) conference is an opportunity for the latest hematology research from around the world to be presented. Although conference presentations do not go through peer review (unlike journal articles), they do provide an opportunity to see what is coming down the research pipeline. You can access 68 (!!) items that mention the word "macroglobulinemia" here.  Of course, you may not want to look at all of them.  So here are a very few, that we think may be of interest. First of all, we would be remiss if we did not point out the [...]

Do you have a rare disease?  Are you a caregiver for a person with a rare disease? If you're reading this on the WMFC website, then the odds are that you answered "yes" to one of those questions! And so CORD, the Canadian Organization for Rare Disorders, needs your input on: The impact of your rare disease on you and your family, and Your perspectives on how Canadian health systems can improve access to rare disease medicines. They are running a survey for both patients and caregivers to gather your feedback. The second part of the survey, on policies around rare [...]

This journal article by a handful of researchers from across Canada, including our frequent contributor Dr. Christine Chen, provides an overview of treatment options for WM, and their usage in current (2022) Canadian WM treatment.  No new research results are presented; the article is a summary of existing knowledge, and thus can be useful to those looking to refresh their knowledge about the various treatment options. Most useful to the lay reader is the treatment flowchart in section 4.1. Download of the .pdf of the article is available at https://www.mdpi.com/1718-7729/29/10/560 (look for the button "Download PDF")