Patient Education Resources

A number of professional organizations, advocacy groups, and healthcare institutions provide easy-to-understand, accessible, and useful information for multiple myeloma patients and their families. This list is not comprehensive but includes a core set of resources.

• American Cancer Society
  The Society is a national voluntary organization that is focused on the elimination of cancer. Specific information about multiple myeloma is included for patients, including links to support groups nationwide.
• American Society of Clinical Oncology's Cancer.Net
  Cancer.net is a patient education website that provides information on multiple myeloma, as well as more than 50 types of cancer and their treatments, side effects, coping skills, and clinical trials. The site also includes links to patient support groups, live chats, and message boards.
• Association of Community Cancer Centers (ACCC)
  Through its newly launched Multidisciplinary Multiple Myeloma Care education project, ACCC strives to raise awareness about provider education needs related to this patient population; establish vetted, designated resources to help fill unmet needs; help educate the cancer care team on effective practices in caring for patients with multiple myeloma; and foster a network of engaged community cancer care professionals.
  
  In 2007-2008 ACCC launched an education project to raise awareness about the importance of comprehensive survivorship programs, as well as to provide useful resources for patients and survivors.
  
• CancerCare, Inc.
  CancerCare, Inc. provides free, professional support services for anyone affected by cancer, including web-based educational seminars. Via their Website, patients and families may access a series of podcasts, print publications, patient list-servs, and information about special programs in their geographic area.
• Cancer Support Community: A Global Network of Education and Hope
  Cancer Support Community is an international non-profit dedicated to providing support, education, and hope to people affected by cancer. The organization provides support services to patients and their families through a network of professionally-led community-based centers, hospitals, community oncology practices, and via online resources.
• The Leukemia & Lymphoma Society
  The Society is a national voluntary health agency dedicated solely to seeking the cause and eventual cure of leukemia, lymphoma, multiple myeloma, and Hodgkin's disease. The Society offers free community-based programs, e-newsletters, webcasts, and education materials for patients and caregivers.
  
  
  • The Myeloma Guide: Information for Patients and Caregivers
  • Myeloma e-newsletter
  • Community-based Education Programs
• International Myeloma Foundation
  For 20 years, the IMF has been on a mission, a mission to improve the lives of myeloma patients. With over 196,000 members in 113 countries worldwide, the IMF is the oldest and largest organization dedicated to finding a cure for myeloma.
• Mayo Clinic
  Mayo Clinic has information to help patients with multiple myeloma prepare for an appointment, as well as information about treatment, lifestyle, coping, and support.
• Multiple Myeloma Research Foundation
  MMRF relentlessly pursues innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure.
• Myeloma Beacon
  Myeloma Beacon is an online service provided by Light Knowledge Resources, an independent Internet publishing company based in Princeton, N.J. The "Myeloma Beacon" provides objective and unbiased news, information articles, and online forums related to multiple myeloma. Their mission is to be a key Internet resource and online community for multiple myeloma patients, their families, and others interested in multiple myeloma.
• National Cancer Institute
  NCI provides many educational resources for multiple myeloma patients and their families, including easy-to-understand information in English and Spanish about cancer diagnosis, treatment, and follow-up care, supportive services and palliative care. Information is provided on line, as well as via the Cancer Information Service toll-free telephone service.
• National Comprehensive Cancer Network® (NCCN)
  NCCN Guidelines for Patients™: Multiple Myeloma. Version 1.2012.
  The goal of this booklet from the National Comprehensive Cancer Network (NCCN) is to help patients with multiple myeloma talk with their doctors and make the best decisions possible. It includes a step-by-step guide of cancer tests and treatments recommended by experts in multiple myeloma. For more information, visit www.nccn.com.
• National Coalition of Cancer Survivorship
  NCCS advocates for quality cancer care for all Americans and provides tools that empower people affected by cancer to advocate for themselves. Their Cancer Survival Toolbox is a set of audio CDs developed for patients and families that let them listen and learn from survivors as they share their experiences , skills, and resources. It contains practical tips and strategies and information for patients at any stage of survivorship. There is a special program within the Toolbox for patients living with multiple myeloma and all of their resources are available free-of-charge.
• National Institutes of Health/National Library of Medicine, Medline Plus
  Here are numerous resources on multiple myeloma from the National Institutes of Health, as well as other organizations. An interactive tutorial on multiple myeloma is a new addition.
• National Marrow Donor Program®
  For more than 20 years, the National Marrow Donor Program® has been helping patients receive life-saving transplants.
• National Patient Advocate Foundation (NPAF)
  NPAF is a national non-profit organization providing the patient voice in improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels. NPAF translates the experience of millions of patients who have been helped by its companion organization, Patient Advocate Foundation, which provides professional case management services to individuals facing barriers to healthcare access for chronic and disabling disease, medical debt crisis and employment-related issues at no cost.

Disclaimer: These resources are regularly reviewed to ensure that links still work correctly and the resources listed continue to be helpful to our visitors. ACCC is not responsible for errors or omissions. If you find that a link isn't working or information is incorrect or if you'd like to have your own organization listed here, please contact us. Inclusion in this list does not serve as an endorsement by ACCC.