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.
The IWMF sponsors an Annual Educational Forum (Ed Forum) held in a different US destination each year. This Forum typically last 2-3 days, and all WM patients, supporters, caregivers, family worldwide are welcome to attend.
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. The Ed Forum environment offers networking meetups for sharing experiences and supporting each other. Many of the medical professionals remain for the duration of the Forum which provides an opportunity for attendees to talk with the experts on an informal basis. Each Ed Forum concludes with the popular “Ask the Doctor” question-and-answer session.
Presentations from past Ed Forums can be found here.
IWWM International Doctor-Patient Forum
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 2 day conference held on October 13-14, 2018 in New York City. Over 250 WM’ers, from 21 countries, attended the Summit. Videos from the IWWM10 International Patient-Physician Forum (also known as the Bing Center’s 5th International Patient Summit on WM) can be found here.
IWMF Educational Materials
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.
Quarterly Magazine – the IWMF Torch
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)||Free air transportation to patients and family||
|Atrial Fibrillation||Learn about AF (or afib) the most common irregular heartbeat||StopAfib.org Melissa Moss 678-223-3833|
|Benefits of Exercise for Cancer Patients||Video by Murray Shaw||https://www.youtube.com/watch?v=9UkDwY3PRJE|
|CONQUER||Official patient voice magazine of the Academy of Oncology Nurse & Patient Navigators (AONN+)||Subscribe or browse and explore online patient stories, immunotherapy, and specialty lymphoma online|
|COVID-19 Learning Center||Latest information from the Lymphoma Research Foundation||
800-500-9976 [email protected]
|Digital Empowerment Course||Free guided video courses to become more comfortable with technology. Offered by Patient Empowerment Network.|
|Doctor Visits||Make the most of your appointments by taking time to prepare for and manage your doctor visits Take Time to Prepare for and Manage Your Doctor Visits||Cancer Today article by Hester Hill Schnipper, former manager of oncology social work at Beth Israel Deaconess Med Ctr., Boston|
|FINANCIAL AND LEGAL PLANNING TOOLS FOR CANCER PATIENTS
Magnolia Purpose in Planning program
|Advance care planning, organizing and prioritizing financial and legal affairs, managing legal decisions||Magnolia Purpose in Planning is offered through Eisai, Inc. us.eisai.com 919-941-6920
Triage Cancer [email protected] 424-258-4628
|Imbruvica (ibrutinib) personal assistance for patients||Talk with a YOU&I Nurse Educator 877-877-3536||Johnson & Johnson Patient Assistance Foundation 800-652-6227 jjpaf.org|
|Immune Deficiency Foundation (IDF)||Learn about primary immunodeficiencies (PI)||[email protected] 800-296-4433|
|Lazarex Care Patient Assistance||Clinical trial navigation and transportation||https://lazarex.org/helping-you/program-services-guide/(link is external) 925-820-4517 [email protected]|
|Making the Decision to Travel||A resource guide with guidelines and safety protocols from Connections Housing with links to recognized U.S. health and travel authorities||https://iwmf.com/wp-content/uploads/2020/12/Making-the-Decision-to-Travel-A-Resource-Guide.pdf|
|Medical Bill Management||Management and advocacy services to help cancer patients avoid overpaying for health care offered by CoPatient through Triage Cancer||
[email protected] 800-797-8942
|Medicare Extra Help||Patient Access Network (PAN) education and financial assistance hub for people on Medicare||
|Medication Resource for Blood Cancer Patients||Leukemia & Lymphoma Society||Handbook – read or download|
|Nutrition Consult||Free one-on-one oncology nutrition consult with a Registered Dietician||Offered by Leukemia & Lymphoma Society – Schedule an appointment online – 800-955-4572 – Nutrition Handbook – Food and Nutrition Fact Sheet|
|Patient AirLift Services (PALS)||Free medical flights for patients and Veterans||888-818-1231 or 631-694-7257 https://palservices.org/|
|Pet Awareness and Wellness Webinar||Joys and challenges of Pets in Your Home When You Have Cancer||
Podcast from CancerCare
|Practical Guide to Cancer Rights||Introduction to legal, employment, insurance and financial issues people face after cancer diagnosis||
|Prescription Drug Assistance||Understanding how your insurance covers your prescription drugs and available resources to help reduce costs||
From Triage Cancer Quick Guide: Getting & Paying for Prescription Drugs
|Screening & Prevention||Keep recommended cancer screenings on track||
Speak with a support specialist and learn about screening options in your area 855-537-2733
Seniors –Guide to Cancer Rights
|Disability, health insurance, retirement options, tools for planning ahead and other concerns for older adults||
|Side Effects Management||Free info and booklets in multiple languages for a variety of symptoms and side effects||
Leukemia & Lymphoma Society 800-955-4572 www.lls.org
|TED Talk by Julie Larson, LCSW – 2021 (14 min)||Message of resilience to illuminate the possibility that even in the midst of real suffering we can find our footing (14 min)|
|Write a Free Will in Less Than 20 Minutes||Create or update your legally binding Last Will & Testament and other end-of-life planning documents online||
Patient Access Network (PAN Foundation)
|Young Adults – Guide to Cancer Rights||For young adults with a cancer diagnosis. This booklet addresses education, employment, insurance & finances||
[email protected] 424-258-4628
|Young Adults Survivorship Workbook
||Age-appropriate information you need throughout diagnosis, treatment, follow-up and long-term management of a blood cancer||
From the Leukemia & Lymphoma Society
See the full list of IWMF Partners.