Note to all IWMF Website Visitors:
Welcome to the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) website. Whether you are visiting for the first time or are already familiar with our website, I am confident that you will find here the valuable information you are looking for about Waldenstrom’s macroglobulinemia or “WM” as it is commonly called.
As you may know, WM is a rare lymphoma, and thus it is not easy to learn about our orphan disease and current treatment therapies. The IWMF, a patient-led and largely patient-funded organization, was established to ensure that patients and caregivers have access to the best and most up-to-date information available about WM. This website is but one way in which we pursue our vision of “supporting everyone affected by Waldenstrom's macroglobulinemia while advancing the search for a cure.”
To WM patients, caregivers, family members, and friends, the IWMF offers:
- Targeted information for those who are newly diagnosed, new to WM, or new to the IWMF. Booklets, treatment guides, and support contactsare included at: http://www.iwmf.com/about-wm/newly-diagnosed.aspx
- Educational information through the regularly published Torch newsletter; booklets with information about how to understand WM, its complications, the common tests used to monitor it, and available treatment options; and this website, which contains a newly completed FAQ section, a comprehensive glossary of medical terms associated with WM, the latest news and information on WM, and descriptions of the activities sponsored by the IWMF. Everyone affected by WM is encouraged to attend the annual Educational Forum, held in various areas of the United States, to hear about the most recent research and treatment therapies from top WM experts and to share experiences with other “WMers.”
- Support from others with this rare disease through more than 75 support groups in the United States and an additional 25 affiliated patient groups in other countries. Join the online discussion group, IWMF-Talk, or if you wish to speak one-on-one with an experienced person, use the Lifeline phone list to talk to volunteers with personal experience on topics of concern to you. You can use the newly improved Patient Database to enter your own test results and keep track of them with reports and graphs.
- Research directed to improving the quality and quantity of treatment options while we search for a cure. The IWMF identifies and supports research funding of worthy projects at leading institutions.
The IWMF’s goal is to help patients, caregivers, and medical professionals meet the challenges of dealing with WM. We hope you will find the information on this website invaluable in understanding and managing your WM. Visit frequently, as we’ll keep posting the latest news that you can use in living well with WM.
As IWMF President and, more importantly, as a fellow WM patient, my hope is that you will find this website and the IWMF as invaluable a resource for comfort, education, and support as I have. With an orphan disease such as WM, every individual and every contribution of time, money and support matters… a lot! Please join us and become a member of the IWMF. It’s amazing what we’ll accomplish together.
Carl Harrington & the IWMF Board
Click here to become a member.