The International Myeloma Foundation (IMF) provides invaluable support for patients and families dealing with multiple myeloma. The comprehensive education, advocacy and support initiatives include:
The IMF Hotline
U.S. & Canada (800) 452-CURE, U.K. (0800) 980-3332 This toll-free information source handles more than 400 calls per month from individuals interested in receiving a variety of information about multiple myeloma. From patients just diagnosed with the disease to family members looking for advice on how to cope with a loved one’s diagnosis, the IMF hotline provides immediate access to an abundance of support and information.
www.myeloma.org This award-winning, multi-lingual site receives over 30 million hits and 600,000 visits per year, as well as offering detailed content on the various IMF programs and services available. With links to IMF sites in the U.K, Brazil, Japan, as well as information in 16 languages, www.myeloma.org is the definitive source for up-to-date details about drug therapies, medical care, conventions and seminars (including webcasts and interviews with leading myeloma experts), links to other multiple myeloma patients and physicians, and support group information.
In 2004, the IMF mailed over 25,000 Information Packs free of charge to people requesting information about multiple myeloma and the IMF. Providing details about treatment options and disease management, the Info Pack includes the IMF Patient Handbook, Professor Brian Durie’s A Concise Review of the Disease and Treatment Options, “Understanding Series” (comprehensive booklets on current therapies and clinical trials), and a current issue of the IMF’s quarterly newsletter, Myeloma Today.
Patient & Family Seminars
A cornerstone of the IMF’s educational outreach, Patient & Family Interactive Seminars held empower patients and their family members by providing them with the latest information on the treatment and management of Myeloma from a panel of world-recognized experts. The focus of these seminars includes novel therapies, research advances, and current as well as emerging treatment options. These seminars provide critical information that enables patients to make educated treatment choices. Since 1993, the IMF has conducted over 100 seminars around the world. The interactive seminar format offers a unique opportunity for attendees to respond to questions posed by the moderator, the answers to which provide valuable information on patient demographics, current treatments, side effects, and shifts in frontline and relapsed therapies.
Patient & Family Support Groups
The IMF has promoted the development of a comprehensive network of support groups around the world, in order to assist patients and family members in finding comfort though the experiences of others. These support groups serve as a clearinghouse of information, a place to discuss personal experiences, and a haven that guarantees the knowledge that they are not alone. IMF staff regularly visits with support groups to discuss new developments and assure that there needs are met. The IMF also sponsors Internet discussion groups for multiple myeloma issues. Each year the IMF conducts a Support Group Leaders’ Retreat where workshops are conducted on how to start a group, manage a group, handle the loss of a group member, keep group information up-to-date, and expand the group.
The IMF aggressively works to influence and monitor public policies. Working with the U.S. Congress, the National Cancer Institute (NCI), and other governmental agencies, the IMF addresses the needs of all myeloma community members. In addition, the IMF interacts with a number of health policy coalitions, including One Voice Against Cancer, C-Change, National Coalition for Cancer Research, and Cancer Leadership Council to promote the interests of all cancer patients.