Becoming knowledgeable about WM, treatment options and coping mechanisms are key for your wellbeing as a patient with a very rare cancer. The IWMF offers an annual Educational Forum and makes available publications and other information to help you and your caregivers become knowledgeable about your disease. Our education strategy consists of:
- Educational Forum
- IWWM International Doctor-Patient Forum
- IWMF Educational Materials
- Quarterly Magazine – the IWMF Torch
- Specialized Support
The IWMF annually sponsors, usually in the spring, an Educational Forum (Ed Forum), in different parts of the US. This Forum typically last 2-3 days and is available to all WM patients and their caregivers worldwide.
Our Ed Forum is the place to learn about our disease from WM specialists who are involved in many areas of clinical practice and research. Presentations are aimed at the layperson and address: symptoms and complications of the disease, current treatment options, new therapies, and recent research findings that may someday lead to a cure. The Ed Forum also offers breakout discussion groups on specific topics of interest to both patients and caregivers. Many of the medical professionals remain for the duration of the Forum and are available to talk with attendees on an informal basis. Each Ed Forum concludes with the popular “Ask the Doctor” question-and-answer session, moderated by Dr. Robert Kyle, of the Mayo Clinic.
Since 2000 the IWMF has co-sponsored the IWWM International Doctor-Patient Forum. This educational meeting occurs bi-annually in different parts of the world following the International Workshop on WM (IWWM) for Physicians/Researchers sponsored by the Dana-Farber Cancer Institute. IWWM International Doctor-Patient Forums have been held in France, Greece, Italy, UK, US, Sweden and the Netherlands.
The International Doctor-Patient Forum provides the opportunity for global patients to be updated on the most current WM research and treatment options by leading international WM physicians/researchers who attend the International Workshop on WM.
The 9th International Doctor-Patient Forum (IWWM9) was held in Amsterdam, NL on October 9, 2016. Presentations from this Forum can be found here.
The 10th International Doctor-Patient Forum is scheduled for October 13-14, 2018 in NYC.
We are pleased to provide, at no cost, several publications written by medical professionals that 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. You can find out more about these publications and download them directly from our website here.
For those who are newly diagnosed, the IWMF has packaged several of our publications, selected videos from IWMF Educational Forum(s), information on our support services, and information about our WM Physicians Directory for those who would like a second opinion/consultation on their condition. This package, the IWMF Information Packet (Info Pak), is intended to help the newly diagnosed and his/her caregiver get a better understanding on the disease, how WM is diagnosed, medical tests and treatment options so that they can discuss these with their hematologist/oncologist. The IWMF Info Pak is available in English, Traditional Chinese, Simplified Chinese, French, German, Italian and Spanish. Additional information about the IWMF Info Pak for newly diagnosed can be found here.
Our Videos & Presentations Library contains presentations from IWMF Educational Forums and from International WM Workshops.
Our free magazine, the IWMF 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.
Dealing with a cancer diagnosis, treatment, and long-term survival issues can sometimes be overwhelming or confusing. We believe that when you are dealing with a cancer diagnosis, it is beneficial to get a variety of perspectives about how others have dealt with cancer or what advice they would share. In addition to our programs and services, the reading material and/or videos from some of our Partners may help answer questions regarding cancer diagnosis and treatment, and you can search on various topics including blood tests, nutrition advice, financial and employment concerns, the role of a caregiver, and more.
- Angel Flight East (AFE)(link is external) 215-358-1900
- Benefits of Exercise for Cancer Patients(link is external), video by Murray Shaw
- Pet Awareness and Wellness Webinar by CancerCare Joys and Challenges of Pets in Your Home When You Have Cancer
- CONQUER, the official patient magazine of the Academy of Oncology Nurse & Patient Navigators(link is external) (AONN+)
- Immune Deficiency Foundation(link is external) (IDF) 800-296-4433 or [email protected]
- Lazarex Care Patient Assistance Program – Clinical Trial Navigation and transportation to and from clinical trials https://lazarex.org/helping-you/program-services-guide/(link is external) 925-820-4517 or [email protected]
- Leukemia & Lymphoma Society- Nutrition Handbook
- Lymphoma Research Foundation- COVID-19 Learning Center – latest information about the virus
- Making the Decision to Travel- A Resource Guide
- Medicare Extra Help – A Patient Access Network education hub for people on Medicare. Learn how you can get help to pay for out-of-pocket costs related to Medicare prescription drug coverage. https://www.panfoundation.org/extrahelp/
- Patient AirLift Services(link is external) (PALS) 888-818-1231 or 631-694-7257
- Personal Assistance for Imbruvica (Ibrutinib) patients: Enroll in YOU&i Support Program(link is external) or talk with a YOU&i Nurse Educator 877-877-3536, visit the NCCN Virtual Reimbursement Resource Room(link is external), Johnson & Johnson Patient Assistance Foundation, Inc (JJPAF) 800-652-6227 or www.jjpaf.org(link is external)
- Side Effects Management Fact Sheets – Download for free here or contact a Leukemia & Lymphoma Society Information Specialist 800-955-4572
- StopAfib.org(link is external) Atrial Fibrillation, Melissa Moss 678-223-3833
- Write a Free Will in less than 20 Minutes(link is external) Patient Access Network ( PAN Foundation)
See the full list of IWMF Partners.