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Ed Forum 2016

Newly Diagnosed?

We understand that this is a difficult time. Not only are you and your family and friends experiencing the gamut of different emotions that come with a cancer diagnosis, but there is much new information to learn. The IWMF is here to help.

First, you need to learn some basics about Waldenström’s macroglobulinemia (WM). Click here for an overview of the disease. Our website also has a list of Frequently Asked Questions (FAQs) about WM. As you become familiar with the information, feel free to explore our website frequently to learn more about the disease and to keep up with the latest news about WM and the IWMF.

Request a free Patient Info Pak, which has many of our publications on CD, selected videos from our most recent Educational Forum, and other helpful information. You may order a Patient Info Pak from our website or telephone our office at 941-927-4963. You can also download several of our publications directly .

You or your physician may want to consult with an expert on this rare disease for a second opinion about diagnosis or treatment. We maintain an international directory of physicians who are experts in WM.

The IWMF provides a wide variety of services to help patients and their caregivers understand and cope with WM. These include a network of Support Groups, our Internet discussion group, our telephone LIFELINE, and our quarterly newsletter, the Torch.

We encourage you to attend our annual Educational Forum, which provides a unique opportunity for patients and caregivers to hear about the latest research and treatments in WM. It’s also a great way to network with other newly diagnosed patients and with “veteran” patients who have been where you are now. The Educational Forum happens every spring and rotates to various regions around the U.S. Check back with us late each year for specifics about the location and program for next year’s Forum.

Many find it helpful to keep track of their test results in a file or notebook or on a computer spreadsheet as a way to monitor their disease status over time. You should request copies of your tests and other medical information during your appointments. Don’t hesitate to ask questions of your healthcare professionals and be a proactive patient. The more you learn about WM, the better you will be able to help manage it.

And remember, the IWMF is here for you!


Did you know?

Did you know the IWMF has over 60 LIFELINE volunteers who will take your calls one-on-one to discuss their experience with a drug or an issue facing you?